December 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

365 letters to you, a few book signing visits, 2 photos with you and a whole lot of prayers.   You haven't had my face and name plastered on warning posters for security.   You have graciously listened to me, asked me questions and seem genuinely interested in these children.   Most importantly, you have not said that dreaded word "no".

Thank you for humoring me.  Thank you for considering helping these children.  20 years and my voice just isn't loud enough.   In the year that we have been writing you, 1600 more babies were born with Congenital Diaphragmatic Hernia just in the United States alone.   800 of those children did not survive.

Every single phone call from a new parent, every heartbreaking message that a little one lost the fight and every prayer for each of these families included a hope that some day, someone will care enough to speak up for these babies.  

I'm not sure why it was laid upon my heart to start this project or why you were the person who I was led to seek on behalf of these children.  But I hope that this quest ends happily ever after.  I hope that you will write the ending of this story.  I pray that you will give these cherubs a voice.  

Thank you for allowing us to dream and to hope.  And that you for all your kindness along this journey.

Sincerely,

Dawn M. Torrence (Williamson) Ireland

CHERUBS President & Founder

Shane's mom

December 30 - Dear Nicholas Sparks (Guest Blogger Kate Langford)

Dear Mr. Sparks,

In August 2002 I underwent a menstrual cycle observation at the University College Hospital fertility clinic in London. I had been diagnosed with poly-cystic ovary syndrome (PCOS) and I wanted to find out the extent of the illness and whether or not I would be able to conceive naturally when I decided I wanted children. I was 28 and I knew that I wanted to have children at some point in the future. The menstrual cycle observation was amazing and I had internal scans weekly to see if and when I ovulated and I saw pictures of the egg as it moved from my ovary down the fallopian tube. As the fertility clinic wanted to give us a full picture of our fertility as a couple, we were asked to have unprotected intercourse on a specific night and a sample of mucus was taken the next day to tell us how ‘compatible’ we were as a couple. The results weren’t great - although I did ovulate normally despite the PCOS, my bodily fluids seemed to kill off my husband’s sperm and we were told that if we wanted to conceive then we would have to consider artificial insemination.

I thought no more about it for two weeks; this was something that we would just have to contend with when the time was right. Then I woke up one morning and was sick. Sick in a way that I’ve not been sick before – not ‘ill sick’ but ‘nauseous sick’ and I just knew I was pregnant even though we’d been told it was practically impossible. I bought a test later that day and it confirmed my suspicions. I think I did about 6 more tests before I believed it! I wasn’t unhappy about it but just wasn’t expecting it and it took me a couple of weeks to even get my head round the idea of having a baby right now.

I had a scan at 6 weeks as a follow-on from the fertility test and there was a little broad bean with a heartbeat – it was amazing. The 13 week scan was great too as there was this tiny human, it was so hard to believe it was real. We had the 20 week scan just after Christmas and it brought a bombshell. The sonographer told us that we were having a boy but that his heart was in the wrong place and we would need to see a specialist from the Fetal Medicine Unit (FMU). This was a Thursday and the earliest that the FMU could see us was the following Tuesday so we had an agonising weekend with our imaginations flying everywhere.

We saw a consultant at the FMU who after careful scanning told us that our baby had a condition called CCAM – congenital cystic adenomatoid malformation of the lung – which meant that he had cysts growing in his left lung which was squashing the right lung and pressing his heart over to the right of his chest cavity. He said that the baby could develop lots of pre-natal problems but might go to full term and would require an immediate operation to remove the cysts. He said that the baby had about 40-50% chance of survival and gave us the option to terminate.

We didn’t even consider termination and so booked in for regular scans at UCH to see how he progressed. The scans became something of an event as CCAM is so rare and we had professors and consultants from Great Ormond Street Hospital, Kings College and a whole range of other doctors from UCH in the room to have a look at the scans. They also considered another diagnosis of congenital diaphragmatic hernia but at every scan they checked the diaphragm and it looked solid so this was discounted.

We were prepared for our baby’s stay in NICU and had tours of UCH’s neo-natal Unit and GOSH, where the baby would have his operation.

Meanwhile the pregnancy went well and we had a final scan at 35 weeks where we were told that the cysts did not seem to be too big and that the prognosis was good, the baby may not need an operation until he was a few months old but we should prepare ourselves that he still may need to be intubated upon birth if he wasn’t breathing well.

I was booked for induction at just over 38 weeks – as UCH is so busy they needed to make sure a neo-natal bed was ready for the baby and that GOSH were on

standby to receive him. Induction didn’t work at first, then the NNU got busy so I had to wait a couple of days before they tried to induce me again and I finally gave birth to Charley Frederick on 4th May 2003 at 12.20am. It was a long and difficult labour and he eventually was born with the help of forceps after a failed ventouse attempt.

He was put straight up onto my tummy and he made some tiny crying noises before he was whisked over to the resuscitation trolley by the neo-natal nurses. They quickly decided that he wasn’t breathing well and so intubated him and put a yellow woollen hat on his head to hold the tubes in. He was then taken down to NNU to be stabilised while I was stitched up and left wondering what was going to happen next.

We saw him again when he was about 4 hours old but only for a few minutes and we were each given a polaroid picture to keep. It didn’t seem real. When I woke up on the ward a few hours later it felt amazing that I had given birth to a baby but somehow he didn’t really feel like mine as I only had a picture to hold.

We saw him for a few hours that day but he was drugged up on painkillers and immobilisers to keep his tubes in place. All the machines were scary at first but we quickly learnt what were good SATS levels, breathing and heartbeat rates. My parents and sister also came in to see him.

Charley looked very strange physically in that his chest was huge and his stomach was concave – a bit like Superman! The NNU at UCH took a chest x-ray and said that the CCAM was worse than they thought and said it looked like he had a bunch of grapes in his chest.

He was very suddenly transferred to GOSH about 4pm on the day he was born as they had a NICU bed and he was deemed stable enough to go in the ambulance – it is about a mile and a half away. This was as shock as we were originally told it might be a few days before he was moved but I think that the x-ray made them realise he needed the surgeon’s care sooner rather than later.

I was still an in-patient at UCH so my husband (Lee) had to go to GOSH and check Charley in and report back to me by phone. He called several hours later with shocking news. Upon looking at a new set of x-rays performed at GOSH a doctor who was just passing by looked up and said – ‘That’s not CCAM, it is CDH’. Everything was being prepared for a lung operation the next day and it was all thrown into flux with the possibility of a CAT scan discussed to confirm diagnosis.

It was a very hard night on my own away from my baby and husband and everything that we were prepared for up in smoke and I had little information about this new diagnosis of CDH. I was finally discharged the next lunchtime and we went straight to GOSH. It was weird seeing Charley again as he looked so tiny in this intensive care bed lying under bubble wrap to keep him warm as he had developed jaundice. He had a personal nurse and all kinds of machines attached to him.

We spoke to a doctor who confirmed the diagnosis of a left sided Congenital Diaphragmatic Hernia without the need for a CAT scan. This meant that there was a hole in his diaphragm where his bowel had grown up into the lung cavity, squashing his lungs and heart and these would need to be replaced in the abdomen and the hole repaired. They explained that Charley would have his operation the next day and that depending upon the size of the hole in his diaphragm a patch may need to be inserted to fix the hole.

GOSH was amazing – the facilities were fantastic and the staff were brilliant. They found us accommodation 5 minutes walk away for the duration of his stay in NICU.

Charley had his operation on 6th May. We stayed with him until the anaesthetists wheeled him off to the operating theatre. It felt so strange – almost unbelievable what was about to happen. We went out and had some lunch, waited in the parents’ room, watched some TV but no news. Eventually we went back to our room and just climbed the walls – was no news good news??

After about 4 hours we gave in and my husband phoned NICU as I stood by anxiously. Then came the worst moment of my life as Lee heard the news and literally collapsed onto the bed saying ‘Oh God’. I just broke down - my baby had died – I felt the world caving in around me. Then my husband realised what I was thinking and told me that Charley was OK – he had collapsed with relief not grief. Charley had been back on the ward for about an hour but they were doing a ward round then getting him settled before they phoned us.

We rushed over to see him. The surgeon, Mr Ed Kiely, told us that the operation was a success. The hole was fairly small and they had not needed to insert a patch to fix it. They had also had to do an appendectomy as part of the operation as Charley’s appendix had ended up on the wrong side of this body. They had changed his ventilator and finally removed the yellow woollen bonnet so we could see that he had some dark brown hair.

He recovered well that night with Lee at his side but had a setback the next day when his abdomen distended and as we arrived to see him he was surrounded by worried doctors, ordering emergency x-rays. That was the second time I thought I was going to lose him and I broke down. It turned out to be trapped wind as his body got used to his new bowel layout and he was OK - Lee spent all night at his side again. I wasn’t able to as I was still recovering from the birth.

Two days after the operation he was extubated and put onto C-PAP to aid his breathing but he was doing well on his own. He was still a little up and down and we hung onto every change in his resps and SATS on the monitor.

Three days after the operation he was deemed well enough to be transferred back to the NNU at UCH. I was terrified about losing the intensive personal care that he had at GOSH but they had other sick babies waiting to come in. Back at UCH he had to stay in an incubator for a day while he was tested for MRSA and he was put under the lights again for his jaundice, which had got quite severe by this stage.

He continued to recover well and tolerated more and more expressed breast milk through a tube and came off C-PAP completely by the time he was 1 week old. It was also when he was one week that I was allowed to hold him for the first time. I was petrified as I’d never held a baby before – let alone a fragile, sick baby – but it was wonderful. He opened his eyes and looked at me.

He was moved to Special Care the next day as he no longer needed ventilation – it was quite scary not having him attached to any machines except a SATS monitor. He still had a feeding tube but we started to learn to breast feed with the help of a speech therapist and nurses. Charley fed reasonably well and got stronger by the day and we were discharged on 17th May when he was 13 days old.

The first few weeks were hard as we were so scared about his breathing and anything at all going wrong. The stress finally caught up with me; I developed mastitis and a breast abscess and had to abandon breastfeeding by 4/5 weeks as my milk flow disappeared leaving me very depressed.

At 10 weeks old we were back in hospital – Homerton then the Royal London as Charley started projectile vomiting and they thought he had Pyloric Stenosis, which would require a further operation. We waited anxiously for a scan while he was once again attached to a drip and machines but it was OK – he had a very bad case of gastroenteritis and recovered within two weeks.

Charley was doing well but he always had noisy breathing and a wheeze. He seemed susceptible to chest infections and was frequently on antibiotics. In December 2003 we were back in hospital again – UCH children’s ward this time – with bronchiolitis. They said that Charley most probably had asthma and we were given a spacer and an inhaler for him to use when the wheezing was really bad. It was impossible to use as he hated having anything put over his face.

We attended various hospital appointments and asthma clinics over the next few months and he was given a nebuliser to have at home to give him his asthma medicine as this was more effective and easier to use than the spacer. Apart from constant coughing at night and wheezing he was generally well and I returned to work in March 2004.

We decided that it would be beneficial for Charley if we moved out of London so that he could breathe less polluted air - we lived by the busy A10 - and in August 2004 we moved to Herne Bay in Kent by the sea.

Since then Charley has come on in leaps and bounds. We barely used his nebuliser in winter 04/05 and in summer 2005 he was discharged from the asthma clinic as he was no longer showing symptoms – he barely ever even wheezes these days. We have been very lucky in that he has never had any feeding problems or other CDH side-effects.

In May 2005 our daughter Scarlett Mae was born – we had extra scans during the pregnancy but she was fine aside from an umbilical hernia – seems like too much of a co-incidence though, to have another hernia in the family.

He has also recently started nursery school, which he seems to be really enjoying so far and we are all hopeful for the future.


Written by Charley’s mom, Kate Langford (Great Britain)

December 29 - Dear Nicholas Sparks (Guest Blogger Monica Young)

Dear Mr. Sparks,

Janessa was a precious baby that God called home shortly after birth. I'll never forget our anticipation her arrival. We had waited 39 weeks for her arrival. Then I went through 8 hours of labor to have our precious daughter. Then just as quickly as she had been born the doctor swept her away. They called a code blue to the delivery room. Then they quickly appeared, along with my doctor and his intern, there was another general practitioner, one specialist, one radiologist and nurses coming from everywhere. I'm guessing there were approximately 20 medical professionals in all. I just sat there with my husband at my side, watching as they desperately fought to keep our baby alive. I can remember sitting there praying for her to fight trying to give her the will to live, "please baby, I know you're a fighter, you can do it". The next thing we know the doctor came over crying to tell us there is nothing more they could do. As we sat there crying, his mother walked in to console us, the minister had come and prayed with us. She had died, due to a diaphragmatic hernia. She weighed 8 lbs, 3 oz & was 21 inches long.

Our nurse was a wonderful person, she cared for Janessa, just like she cared for any new baby. She tells us this story that was her experience with our daughter. We didn't want to hold her right away, so she decided that she would go and rock the baby, because every baby deserved to be rocked. She took her into the break room for surgery and to her surprise there was a rocking chair just sitting there, so of course she rocked our baby. She had never noticed it there and had asked several people if they had seen it there, "no, there has never been a rocking chair in there". She went back in there several days later and the rocking chair was gone. To us a sign of God to help our precious little one.

Janessa is truly and unconditionally loved by so many people. I never thought that a baby, who no one had gotten the chance to know, could touch the hearts of so many.


Written by Janessa's mom, Monica Young (Nevada)

December 26 - Dear Nicholas Sparks (Guest Blogger Nancy Kowalski)

Dear Mr. Sparks,

I was pregnant with my second child in the summer of 1985. The movie E.T. had just been released to video and there was a resurgence of E.T. dolls and toys, much like this year with the movie’s release. My husband and I were on the boardwalk at the Jersey Shore, and he won one of those E.T. dolls on a chance wheel and gave it to me. Suddenly, the strangest feeling came over me, and I could not look at or hold that doll. My husband laughed, but I said it made me think of a deformed fetus, and being pregnant, I found that very disturbing.

My son, William, was born in November of 1985, with a congenital diaphragmatic hernia. It was not diagnosed during the pregnancy. In 1985, ultrasounds were not done routinely on healthy low risk 27-year-olds. I still believe that on some subconscious, sixth sense kind of level, I knew something was not quite right with this baby that summer.

I found the CHERUBS web site only this year, while searching for some information on scoliosis in kids who had this CDH defect. I found little, but as I read the stories of all the parents and children here, tears filled my eyes and still do, even as I recall sixteen years later the birth of my son.

William was born by Cesarean section at a community hospital in Northern N.J., where we live. The obstetrician did the C-section for fetal distress, as they were having difficulty with the fetal heartbeat on the monitor. Because it was a C-section, my pediatrician was present. As the baby was removed, there was no cry, and the pediatrician took him to the table to examine him. He was able to get air into my son, but my son would not breathe on his own. Minutes later, an X ray was done. As I was in recovery, the obstetrician came to tell me that my son had a congenital diaphragmatic hernia. He briefly described this defect to me. I, as a pediatric nurse, had a good understanding of medical problems but had never heard of this. I asked if he was going to be okay. The doctor said he did not know. My pediatrician had called in a pediatric surgeon. The pediatrician was with my son the entire time, making sure he was getting air and oxygen to his brain.

The pediatric surgeon came to talk to me and my husband while I was still in the recovery room, and told me a team from Columbia Presbyterian in NYC was coming for my baby. The team from the NICU at Columbia arrived about an hour, maybe two, after my son was born. They brought him by so I could see him, and then whisked him away. My husband also left to go to Columbia with our son. I was given lots of medication and was quite snowed. I heard later that there was a traffic jam on the George Washington Bridge as they were crossing it.

Late that night, I got a phone call from my husband, Jim. He told me that Bill had made it through the surgery, but was still in critical condition. He had been talking with many of the team from Columbia and tried to fill me in on all the information, but we were both still numb with shock. I tried as hard as I could to talk in my medicated state, and I recall my mouth being so dry I could hardly form any words. We would talk again in the morning.

At that time, ECMO was considered still “experimental.” Dr. Charlie Stolar, one of the pioneers of ECMO, explained it all to us, and we had to sign a consent form that was about ten pages long in case of respiratory failure for which ECMO would be used. We did, but our son was not in need of it.

Of course, our story is very long, because our son is now sixteen years old, and we have had to face many obstacles along the way. We brought our son home in time for Christmas that year. He has had reflux and has not been a great eater. He has not required any feeding tubes but does still eat slowly, needs smaller more frequent meals (lots of snacks) and is smaller than his peers. He has had a total of five surgeries for things related to the CDH – once for adhesions, once for a rip in the original repair, once for a gallstone which was probably due to the TPN feedings, and for a pectus excavatum (concave chest) repair. Now we are facing scoliosis surgery, to take place this summer.

His most serious problem is the pulmonary hypoplasia. His lung function is at times poor, and he also has asthma, although the asthma has improved a lot over the past year or so. I still listen for his cough at night and still check him more often than I do my older daughter. We still see the pediatric pulmonologist at Columbia regularly. I asked him recently if he could just transplant one of my lungs to Bill. He said it could be done, but that Bill is not even close to needing that.

I remember the day we brought Billy home, in December 1985. The Director of Pediatrics sat down with us and asked us to talk about all we’d been through. Then he told us to take him home and love him just like any other kid. I also remember the morning after he was born, when I learned that he had lived through that first night, I decided that if he could go through all that then I had to do everything possible to give him the absolute best that I could. I started using the breast pump so that I could breastfeed, and I did for nine months.

We have been so very, very lucky to have Bill but also have had some very difficult mountains to climb. Somehow I thought that when I brought him home that first time, it was all okay and would be from then on. Of course, I was wrong. Over the past years I have come to accept that there will always be higher mountains with Bill, harder times, more worry and heartache. And, of course, he is so worth all of it.

I should say that Bill has a very typical teenage life. He is a sophomore in high school, an honor student, and wants to go into biomedical engineering. He is in the band, tried out for the fencing team but got cut. He bowls, builds things, plays video games with his buddies, and takes his little boat out on the lake in the summer. He argues with me all the time, especially about his independence, and tells me that I hold him back. He knows I worry about him. I know when he sleeps over at his friend’s house, the next day we will be using the nebulizer, and he’ll probably be coughing. I wake up in a near panic still when he coughs at night. I take him out for driving lessons. I worry about everything.

Of course, as all mothers of cherubs must know, every bit of heartache is so much more than worth it. Bill and I share a sense of humor and we watch movies together and his smile and laugh just make my life worth living.

I found this site as I was looking for information on scoliosis and CDH. Although my cherub is much older than most, I remember when he was a baby, it was so difficult for me to imagine the future – him as a teenager, going to high school, learning how to drive. I was always somehow afraid we might not see it.

Written by Bill's mom, Nancy Kowalski (New Jersey)

December 23 - Dear Nicholas Sparks (Guest Bloggers Linda and Daniel West)

Dear Mr. Sparks,

This is the story of our beautiful little girl, Emma. She blessed our lives. My name is Linda, and I am Emma’s mum. Her daddy’s name is Dan. In June 2000, we found out that we were expecting our first child. We were a bit shocked at first because we had only been trying for three months and had expected it to take a little longer, but we were very pleased. After getting a positive home pregnancy test result, we went off to see my GP to have it confirmed. We were told our little baby was due on 11 March 2001.

Things went pretty well, and at 12 weeks I decided to take the option of having a neuchal translucency scan. I was so excited that I would get to see our baby for the first time. It was still hard to believe that I was pregnant; I had been getting a little bit of morning sickness, but never actually had to throw up so was managing that OK. My GP told me that this scan would check for things such as Down syndrome. Off I went for the scan; it was amazing seeing the little baby on the screen, my heart just swelled with love. It was real! But I went from one almighty high to a horrible low with a thump. The radiologist advised that the thickness of the skin at the base of our baby’s neck indicated an increased risk of Down syndrome; my risk went from 1/380 (round about) to 1/188. We were both scared and worried. We were told we should have some invasive tests done to see if the baby did have Down syndrome. We were told that there were two types of tests we could have done, amniocentesis, or chorionic villus sampling with amnio.

My GP recommended we go to talk to an obstetrician for help in making our decision and recommended Dr. Hill to us. We went and saw Dr. Hill, and in our circumstances, he recommended amniocentesis and recommended a doctor to us. We made an appointment for the amnio and then started on the waiting game. It was (or I thought so at the time) the worst 4 weeks of waiting we had ever experienced. At 16 weeks we went and had the amnio done and everything went fine. But a hint of what was to follow was contained in the doctor’s report; it mentioned that it “appeared the stomach was partly in the chest.” We saw this and wondered what it meant, but as no one had mentioned anything to us, it must not have been serious. Weren’t we wrong!

Two days later we got the preliminary results back, and it was good news. So far, it indicated everything was normal, and the baby did not have Down syndrome, but we had to wait another week or so for the final results. We happily went off on our holiday to New Zealand to visit my family feeling fantastic. While we were in New Zealand, we got the final results, which confirmed that our baby did not have Down syndrome; everything with the baby’s chromosomes was normal. It was like a load off our shoulders, and we were looking forward to the rest of the pregnancy.

We were booked in to have a 20-week scan when we got back from our holiday. Our world collapsed when we were informed then that the baby had a diaphragmatic hernia. I have never been so scared. What was this “diaphragmatic hernia”? What did it mean? The obstetrician who did our scan and amnio recommended we go straight to hospital to advise them, which we did. Luckily, a nice nurse was on duty at the antenatal clinic that I attended at the Royal Women’s Hospital. She arranged for a neonatalogist to speak to us about and explain what was wrong. When we were told that we could not underestimate the seriousness of the condition and that our baby could die, we were absolutely stunned. This was not supposed to happen to us; what had we done wrong! The doctor was very good and drew diagrams and explained in as plain a language as he could what would have to happen. As you can imagine, we were full of questions. We were told that the baby would need to be taken from us immediately after it was born, sedated and intubated, and placed in intensive care; when they were happy the baby was stable, they would look at operating. We could expect our baby to be in hospital for 3 to 4 months. We walked out of there in shock.
We were back at hospital the following week to see an obstetrician and find out more. It was the beginning of what seemed like 1,000 visits to hospital. After not liking the first obstetrician we saw, we switched clinics to Dr. Hill’s, the doctor we had seen privately before this diagnosis. We both liked Dr. Hill and were comfortable with him looking after us. We were determined to do everything we could for our little baby. Thankfully, it was around this time I found Cherubs. It answered a lot of questions for me. My way of coping was to find out all I could and be as prepared as I could.

We then began the cycle of monthly appointments, ultrasounds, etc. We had decided not to find out our baby’s sex. I had been diagnosed as having polyhydramnios, common with babies with CDH; otherwise, I was feeling okay, getting bigger, feeling lots of movement. We had a meeting with Dr. Kimble who would be performing the surgery. After being on an emotional roller coaster for a couple of months, he instilled some confidence in us, and we felt better; it was not hopeless. He told us that babies who did well usually did really well, and those who did not do very well, didn’t. It was up to each individual baby.

At 31 weeks, I ended up in hospital. I had been at work and was having lots of what I thought were Braxton Hicks, but realised they were coming a bit thick and fast for that. I rang hospital, and they said, “Come in; we had better have a look at you.” I stayed there for three nights, with two trips to the labour ward, as they thought I was in early labour. I had two steroid shots for the baby’s lungs. Fortunately, my cervix remained long and closed, and they managed to stop the contractions and sent me home. My obstetrician advised I had an irritable uterus due to all the extra fluid, and I would have to take it easy and finish work. We were told the baby would probably come early. We had another couple of trips to hospital, which were false alarms, and our baby’s due date came and went.
The time before Emma’s birth had been tough, but we knew we were in for tougher. I was not very patient before all this, but feel I am a more patient person now. Some things are just beyond our control. We had received lots of support from our families. But I felt some members of the family did not really understand the seriousness of the matter.

I was getting a bit fed up of it all when her due date came and went. I wanted her out! I wanted the next stage to start. I went for my weekly appointment four days before she was due, hoping my doctor would say, “If you have not had it by Monday, come in and we will induce you.” But he checked me out and said it was not safe to be induced yet. I was a bit disappointed but realised there was nothing I could do; the baby would come when it was ready and while I was carrying the baby, I knew he or she was safe. The following week when no baby had arrived, he decided that if I had not gone into labour by Sunday, to come in and he would book me in to be induced. It was a bit scary. We had a date and things were going to start happening!

My mum came over from New Zealand about six weeks before our baby was due (as she was supposed to come early!), and then two weeks before she was due, my sister and father arrived. I am so glad they did; they were there when Emma was born and shared her entire life with us. Danny’s parents came down for her birth as well.

On Sunday evening, I was admitted to hospital and had the gel placed on my cervix. Danny was with me and stayed for a while but we were told that nothing would happen until the next day so he went home. That was about 10:00 p.m. I tried to get some sleep (fat chance!) and about midnight asked for a sleeping tablet. This did the trick, and I got about 4 hours sleep, waking at 2:30 p.m. I started to get small contractions and had a lot of what felt like bad period pain. It was 3:30 p.m. when I was lying on my side that I moved and felt a “pop.” I remembered my mum saying that when she was having my brother she felt a pop before her waters burst. I rolled over and sure enough my waters came gushing out. It was the weirdest feeling. I called the nurse, and she changed my bed, etc. There was no turning back now! About half an hour later, the contractions started to increase in strength and frequency. I rang Danny at 5:00 a.m. asking him to come in. I needed and wanted him with me. At around 6:00 a.m., Danny arrived at hospital with my mum, dad, and sister in tow, all looking a bit bleary-eyed. It was the start of a long day.

About 7:00 a.m. they took me down to the labour ward. I had decided I would have the baby by lunchtime (again WRONG!). I needed pain relief not long after that, so I tried the gas. It did not do much for me, and around 9:00 a.m. I asked for an epidural. At around 12:40 p.m., I was 3-4 cm. dilated. Things were going pretty slowly. I was hooked up to saline, syntocin, and the fetal monitor and was not allowed off the bed. Baby was doing fine. I managed to get a bit of rest in the afternoon, and Danny got to have a snooze on the comfy chair they had in the labour suite at the same time. At 5:40 p.m., I was fully dilated and bubs was in the right position, so the midwife said I would be able to start pushing in an hour or so. I started to push about 7:00 p.m., but after an hour and a half of pushing and getting nowhere, I was exhausted. It had been a long day, and I felt like I was getting nowhere. They’d had to turn my epidural down as my blood pressure dropped. I was starting to get distressed, but bubs was doing ok. I just knew I could not push her out, and I was disappointed with myself. I felt like a wuss, complaining; my back was killing me, and I could not get comfortable. The midwife called the registrar in and she checked me out; they then discovered that she had turned posterior and appeared to be stuck, so they called my obstetrician.

While we were waiting for him, the midwife said I might have to have a caesarian. I was prepared to do whatever they felt was right, but from the start, my doctor had said he wanted me to give birth vaginally. Dr. Hill arrived, checked me out and immediately took charge. He decided on a vacuum extraction, and they would try to turn her. I was immediately calmer and listened to the instructions they were giving me about what I had to do. Once I knew that I was going to have some help, I felt a lot more confident. Twenty minutes later (at 9:39 p.m.), our beautiful little girl came into the world. She was placed on my chest for a brief minute and then whisked off by the midwife to the resuscitation team waiting outside the door. We never really saw her, just her sore little head from where the vacuum had been, but we heard one cry from outside the door, and we both looked at each other, our hearts filled with love. They were happy with the way she responded to the intubation, and she was taken up to the ICN. They brought down photos of her shortly after; she looked just like her dad.

I did not get out of the labour ward till 1:00 a.m. the next morning, as they were very busy. We all went up straight away to the nursery to see her. They arranged for the chaplain to come in, and we baptised her. I got back to the maternity ward at 2:30 a.m. and was put into bed. Danny, my Mum, Dad and sister Megan then left; we were all exhausted. It had been a long day! I have to say that I would not have made it through without my wonderful husband. He was fantastic. They gave me a tablet so I could sleep, and I woke 4 hours later just relieved that they had not come and woken me during the night, so my little girl must still be alive.

She remained stable for the first day, but was on maximum support. She took a couple of turns for the worse, but managed to work her way back again; she was a real fighter. It was hard seeing her lying there. All we wanted to do was to pick her up and run away with her. We sat with her, talked to her, told her how much we loved her and all the things we were going to do with her when she came home; we also read stories to her.

The surgeon came round to see her, but he was not happy with her condition. She was not making any headway. The doctors advised us that she was on maximum support, and she had to improve before surgery could be considered, as she would need more support after the surgery. This was heartbreaking. The Tuesday I was in euphoria--we were parents. It was the most wonderful feeling, but mixed with this horrible fear we would lose her. On the Wednesday, the tears flowed quite often. I could not sleep on the Wednesday night; I woke up in the middle of the night, and my thoughts were filled with Emma. I asked the nurses for some paper and an envelope, and I sat down and wrote her a letter. When I finished the letter, I went to the nursery. I had to see her. They put the letter in her cot. I wanted it to be with her all the time, as we could not be there every minute of the day. I wanted a part of us with her.

On the Thursday morning, I was up and hoping to be discharged. I went up to the nursery and read her a story. Danny arrived just as she took a turn for the worst. Megan, my sister, was there, too. She managed to improve slightly but not up to what she had been. We spent the morning with her and took more photos. At lunchtime, I went back to my room, saw the doctor and was discharged. We had 1,000 things to do. We went to buy a mobile phone so that when we were not at the hospital they could get hold of us at any time. I rang that afternoon and called to see how she was doing. She was still the same, no improvement. I told her nurse that we would be in around 6:30 p.m. – 7:00 p.m., that we were just going to have some dinner.

We got to the hospital about 7:10 p.m. I was walking in when the nurse came towards me. For some reason, I had hurried ahead of the others; they were washing up as was required. I just had to see her, so I went on ahead of them. One look at her face, and I knew that my little girl had gone. They had tried to call us, but we were on our way in. It had happened so quickly; she died just before we got there. I turned and looked at my husband who was about 20 metres behind me, and he knew as well. That moment was the worst we had ever experienced and will be the worst we ever experience. We ran to her. She looked so beautiful, so peaceful.

They took the respirator out, and we were able to hold her for the first time. The staff at the nursery was fantastic. We held her by her cot for a while, and then they took all the other leads out, and I carried her to a special room they had. We held her, kissed her, cuddled her. My parents and my sister did as well. Danny and I gave her a bath and then dressed her in a little outfit I had bought for her. We then held her, kissed her, cuddled her again. During this time we took lots of photos. This time we spent with her was so special; we will never forget it. She was our most beautiful and special daughter.

The hardest thing was leaving her. We went and saw her again the next day and held her again. I had to because I was having trouble believing what had happened. I had to see her again. We laid her to rest after a beautiful service the following week.

Emma will always be with us in our hearts, until we see her again.


Written by Emma's Parents, Linda and Daniel West (Queensland)

December 21 - Dear Nicholas Sparks (Guest Blogger Kimberly A. Webster)

Dear Mr. Sparks,

I found out I was expecting my second child in September 1999. This would be a sibling to our then 1 1/2 year old son, Cole.

I was so excited and grateful to be given another blessing to nurture and love. My husband and I were so excited as the weeks passed I happily went through all of the prenatal testing. I was very sick once again as I was with Cole but I knew what miracle was happening inside me. We had experienced a molar pregnancy before Cole and we knew how fragile life was this pregnancy progressed and survived a car accident on February 28th. I totaled my vehicle but thank God baby and I were okay.

Early in may my husband, Cole and I went to a routing ultrasound at my ob office. The technician had the look on his face that was too familiar for me. My blood went cold because I sensed his concern. He called a doctor in for a second opinion as to what he was viewing the doctor explained that the baby's stomach looked very full and that was the shadow they were seeing. At a closer look he talked about CDH. It was downplayed so much that I was not worried. I left the office with an appointment for a level 2 ultrasound in a few days. My midwife was teary eyed when I left and hugged me and said she would pray for us. I actually thought everything was fine and correctable. I was a little upset about the possibility of not delivering at our local hospital but at one more equipped to handle the operation that would follow the birth.

The level 2 ultrasound confirmed CDH and my world changed once again I had the feeling that all was not going to turn out okay like I had with the molar pregnancy. I focused on my work and my family and prayed that this baby would battle the odds. The amnio showed no abnormalities and told us we had a daughter. Her name is Shae Ashley.

We were sent to children's hospital in Philadelphia for level 2 ultrasound, fetal echocardiogram and an MRI. After a day of testing we had a consultation with dr. Alan Flake, who most of you probably recognize as one of the forefathers of the studies of CDH. What an honor to be sent to one of the top hospitals in the U.S. and having the worlds best advise you on a decision.

Shae was given a very grim prognosis and fetal surgery was not even offered as a solution. The doctors along with our genetics counselor gave us some choices. After painting an awful picture of what life would be like for our daughter my husband and I knew without a doubt what choice we had to make. I will be eternally grateful to God for giving us the tools to make our decision, and for the strength to carry on despite our heartache.

Back home we met with our doctors to make arrangements. We were going to have Shae at 25 weeks gestation. We knew the outcome and we were at peace knowing she was not going to suffer. We wanted our daughter in the worst way but not at her expense. She was not going to have the life that Cole was having. We could not put her though the trauma of being born with her severe form of CDH.

Being induced was horrible and the birth is something ill never forget. It was the single scariest moment of my life. Then I saw her and immediately felt at peace with my life. I never doubted making the choice. She was truly an angel she touched our lives in a way that no one could understand she was the most beautiful baby.

We are constantly reminded of Shae's life. We have surrounded our home with pictures and reminders. We put in a garden in the memory of her sweet life. We know that one day we will all be together again. Shae is our baby girl and Cole's baby sister and she was called home to do a job. Until we meet again my little princess.


Written by Shae's mom, Kimberly A. Webster (New York)

December 11 - Dear Nicholas Sparks (Guest Blogger Judi Toth)

Dear Mr. Sparks,

I'm retired from the Army (3 years now) and had my son Christopher on February 2, 1989 while I was stationed in The Netherlands. I was a single mom, with no family members there to support me during the pregnancy and also my "nightmare" (they were all in CT). I did have a good network of friends and coworkers and friends from 2 churches I attended. They were my lifeline at the time. 6 weeks before delivery they performed about the 20th ultrasound (I lost track - I was hospitalized 3 different times with contractions) and it wasn't until then that they noticed that they couldn't find his stomach. They thought that it would be a blind pouch, a sealed esophagus, or no stomach. All of which could be surgically repaired. They told me that they couldn't do anything until he was born. They would have a pediatric surgeon on call as soon as I went into labor (which they did). Christopher was born on due day - February 2 after a long labor. They immediately whisked him away from me and out of the room. About 30 minutes later, Dr. Zandfort came back in and tried to tell me about CDH and how that's what Christopher had. I couldn't comprehend it. I just wanted my baby! They told me they had to transfer him to Maastrict University Hospital where they could operate on him. I would be given a few minutes to spend with him before they took him away. I wasn't prepared to see him in an incubator and on oxygen. How could this be happening to him? He looked normal besides all the tubes. The nurse pulled away the blanket covering him and I couldn't see what they were talking about. I told them his stomach and chest looked normal! They told me I could touch him. I did and stroked his little arms. He immediately grabbed my right index finger and wouldn't let go! He squeezed my finger so hard as though he was saying "don't worry Mom, I'll be with you." Shortly thereafter, they came to take him away. As they wheeled his incubator away, I knew deep down in my heart and soul that I'd never see him alive again. I screamed so loud and to tell you the truth, that's when I knew what it was to have your heart ripped out. They took me into surgery to remove my placenta (it wouldn't come out due to placenta acreta -- the placenta grew roots into my uterine wall and wouldn't come out. It was as though it was cemented in place). As soon as I woke up in the recovery room that's all I wanted and screamed for was my baby. They wouldn't listen to me! They spoke a few words of English to me and then in Dutch so I wouldn't understand. What were they saying? Why couldn't I be with my baby? I kept calling for Dr. Zandford. They insisted that I wait 2 hours before they would release me to my room. That was one of the longest 2 hours of my life. Finally, back in my room, Dr. Zandford came back in and explained once again. I wanted to be taken to him. He told me Christopher would be having his surgery that day and that I couldn't see him anyway. He promised me he personally would take me to see him the next day. All day long, I prayed, I asked for updates. Friends visited and prayed with me. My family and friends were calling from the States. Finally, exhausted, they told my visitors to leave about 8 pm. One friend, Lana, would spend the night in my room with me. While she was in the restroom changing I prayed to God again, one on one and told him to do what was best for Christopher. I was letting go and letting God. At about 830, a strange doctor came in the room. I had never seen him before (or after). I took one look at him and immediately knew. When I asked him when, he told me about 30 minutes ago. That's when God took him -- when I let go and let God. There was no sleep that night. My American doctor came to visit along with my minister. The next day it was a steady stream of visitors. They told me they would bring Christopher to me. I wanted him baptized even though I knew he was already in heaven. My minister agreed to perform the baptism. I asked my good friend Pam to bring me a white rose for the baptism. She couldn't find any. But she did find white tulips. He was baptized with a white tulip. My other close friend Jo, who was also my labor coach and mentor, assisted my nurse Marguerite, to dress Christopher in his outfit. She even got him a little gold cross. I was terrified of seeing him and meeting him, after all he was dead. Jo put my fears aside telling me he was my son and that as soon as I held him, I wouldn't want to put him down. How true that was! I got to spend 4 hours with him in my arms. The only time I let him out of my arms was to be baptized. My arms were aching so badly, but I couldn't let him go! Finally I had to. Marguerite had snipped a lock of his hair for me and given it to me. I also had a lot of pictures taken. Marguerite asked me if I wanted to see his scar. That is the only thing that I couldn't look at! The US Army medics arrived finally took him away to Frankfurt for his long journey back to the United States so he could be buried here. I on the other hand spent 8 days in the hospital recovering from the delivery and surgery for the placenta acreta. I'll never forget one of my friends from church, Mary. She came by and we prayed together and she told me "I know how you feel." I yelled at her, "No you don't! How could you possibly know how I feel?" That's when she calmly replied, "Because I've been in your place. I too Lost a child." I felt so terrible for her and yet a little comforted because someone DID know and understand what I was going through. She helped me quite a bit. Finally, it was time to leave the hospital. That was one of the hardest things I have ever done. They had placed me at the end of the hall away from other new mothers. I had to go down that entire length of hall with no baby in my arms. Another part of my heart was being ripped out once again! I made it back to the States and to my family on the 12th. The funeral would be on the 14th - Valentine's Day. John, Christopher's daddy, met me at home (he was in CT throughout the pregnancy) and we made the funeral arrangements together. The evening before the funeral, I was laying down and had a cramp in my leg. Mom massaged it out and I went back to sleep. An hour or so later another cramp. She massaged it again. I went to the bathroom and passed a huge chunk of placenta. I put it in a plastic bag and after calling a friend who is a doctor in Maryland, I went to the emergency room. By this point I couldn't move my legs. They wheeled me into the ER and my mom got her OB/GYN doctor to come in. He examined me and told me I was so infected that if he tried to do a D&C on me it would be like taking a price tag off a piece of wet tissue paper with a blade. I would have to be on antibiotics by IV and admitted. I could only think of Christopher's funeral the next day. He agreed to release me long enough for the funeral. I still couldn't move my legs. To make matters worse for me, the only place they had room for me was in pediatrics! My room had a crib in it! Not for long though! The next morning, after seeing an internist for my right leg at this point, I was allowed to go to the funeral. We had an open casket, much to John's disapproval. But I felt it was important for my family and friends to meet Christopher. I didn't want them looking at a closed casket. I'm so glad I made that decision. So was my family. The funeral went along beautifully and I went back to the hospital. That was the beginning of all my medical problems. Three D&C's and 6 months later I would still have placenta in me let alone all the infections. The cramping in my leg was due to a blood clot that had lodged in my popliteal artery in my leg, behind the knee. I walked around with the clot for 6 weeks before that too was surgically removed. (Which also started the stream of other surgeries.) To this day I still don't know if I can ever have children. I was told to try for 6 months and then they would test my tubes. But John and I broke up by then. I was told that if I had delivered in an American hospital, they would have performed an immediate hysterectomy on me. Dr. Zandford however wanted to ensure that I at least had the chance to try to have another child. God willing, one day I may. If not, I can live with that also. I have been blessed with many children in my life. To include not one, but six, yes six, Godchildren! In the meantime, I was and am always looking to find out more information about CDH. It wasn't until about 6 months ago, while getting into researching angels, did I go looking on the web for cherubs. Lo and behold, the first site that was listed was Cherubs! My heart leapt into my throat! I immediately went onto the site and after reading every page, I contacted Dawn. This was the first mom that I had "met" if you will, that had a child with the same thing that Christopher had. People that I spoke with never heard of CDH (but that didn't mean I didn't tell them what I knew!). I worked at a clinic where newborns would come in every day. It took me a few years, but I was able to finally hold one in my arms. Actually, when my best friend Donna had her son David, is when I held a baby in my arms for the first time since Christopher. I told her it was okay. It wasn't Christopher, it was David that I was holding. That was my breakthrough. Until then, I couldn't even face a toy department to send presents home. I would send money to Mom and she would buy the presents for me. Christmas was extremely hard for me and my family, exchanging presents. But that too got a little easier each year. Each Christmas I go back to Connecticut where Christopher is buried and Put presents under the 2 trees I planted by his headstone (which by the way has a cherub and a tulip on it!). Each fall, new white tulips are planted behind his headstone and in front, crocuses, miniature tulips and daffodils are also planted. I also plant the bulbs in my front yard. Each spring as the flowers come up, I always think of Christopher. A little bit of Holland brought to America to brighten people's day for only a little while thanks to my Dutch baby!


Written by Christopher's mom, Judi Toth (Maryland)

December 7 - Dear Nicholas Sparks (Guest Blogger Charlotte Pajatin)

Dear Mr. Sparks,

During our ultrasound at age 20 weeks, Baby Liam was diagnosed with a severe Congenital Diaphragmatic Hernia. CDH occurs in about 1 in 5,000 live births. It occurs when the diaphragm does not form properly and as a result, some parts of the abdominal organs moves into the chest that affects the lungs to develop and grow. As to what causes CDH? our doctors said it was an accident by nature. Our baby boy was given less than 10% chance of survival. We were given an option to terminate the pregnancy but we chose not to. With our strong faith in God and our faith in our son Liam, we continued with our pregnancy. And as parents, we just felt like it's so wrong to just give up on our baby without giving him a chance to fight for his own life. Since then, we had doctors' appointment twice a week. And as our due date got closer, Liam's situation worsened. He was too small for his age, his heart was too weak, he didn't have enough lung tissues to basically breath when he gets out, and that he might not even make it out from the resuscitation room after birth. We were heartbroken but our faith remained unshaken. Doctors decided to induced labor at 38 weeks, we were in labor for 3 days until baby boy Liam came out August 6, 2013 through normal delivery. Liam was so strong, everybody predicted I was going to have a c-section because his heart was too weak, but our baby boy made sure he came out through normal delivery. He was taken away from us immediately. We never got the chance to hold him, he tried to cry but his lungs were underdeveloped we never heard him cry. We waited for an hour after delivery and it was one of the best news we had, he made it out from the resuscitation room when everybody doubted he will. He was then sent to the NICU, and for 24 hrs he tried to fight for his life. August 7, 2013, we were faced with the biggest decision of our life, doctors said his stats were going down and he wont make it for one more night. He was just too weak already. We decided to just hold him in our arms until he passed. We know Liam wanted to get to know his Papa and Mama before he reunites with the Lord. It was the most painful, but we know Liam were able to feel our love and warmth. Liam was a warrior, he knew since he was inside that we were fighting for him, that's why he really fought so hard when he came out. We wanted to see him, we were so excited to be with him and so was he. Liam is now an angel but he will forever be in our hearts. Liam has taught us the value of life. And we will forever be grateful to God that we were chosen as Liam's parents.

Written by Liam Tapia's mom, Charlotte Pajatin (CA)

December 3 - Dear Nicholas Sparks (Guest Blogger Ed Swartz)

Dear Mr. Sparks,

Jill and I left to meet Jill's obstetrician, Dr. Ruggiero, at Lourdes hospital in Binghamton, NY. When we arrived we found that Jill wasn't close to delivering. A few hours later, Jill's other obstetrician, Dr. Canino, arrived and put her on Pitocin to induce labor. Contractions came on stronger and more frequently after that. As soon as the baby arrived, Dr. Canino flipped it around and announced that we had a baby girl. Dr. Canino placed her on Jill's stomach, and I cut the umbilical cord. We named her Alisha after her grandmothers Alice and Sharon. Alisha was born at 12:27PM, about seven hours after we left for the hospital.

As soon as I cut the cord, my first concern arose. Alisha didn't cry, at least not like I had seen my two sons cry. Our head nurse started bagging Alisha as she appeared to need a little help breathing. I stopped video recording at this point as I sensed something wasn't right. The nurses took Alisha to the nursery, and Dr. Canino followed.

When I arrived at the nursery, all the blinds were down. It stopped me in my tracks. I caught Dr. Canino's eyes through the blinds, and they were wild in fear. I felt I should leave the area. I stopped momentarily in the waiting area between the nursery and the birthing room to collect my thoughts as to what to say to Jill and Alice. The intercom announced, "Code Blue Nursery". I knew this call was for Alisha. A moment later, an urgent call "CODE BLUE NURSERY". My heart sank as I sensed we were loosing her if we hadn't lost her already. I returned to Jill and her mother, Alice, and told them that something was wrong, but that I didn't know what. Dr. Canino arrived at this point and informed us that our baby wasn't breathing on her own, and that I must see the baby even if it was through the blinds of the nursery. I did so. As I watched, Dr. Canino came to the window and mouthed, "Better" which meant they were getting a heart beat and they were getting oxygen in her. Soon Dr. Canino came out, and asked that I return with him to the birthing room. Dr. Canino proceeded to tell Jill and I that Alisha was a very sick baby. She had a hole in her diaphragm. Her intestines came up through the hole, pushed the heart to the right side of her chest cavity, kept her left lung from developing and constrained her right lung. This was preventing the proper oxygen level from entering her blood stream, and her heart was working too hard to make up for it. Dr. Canino insisted that both of us walk to the nursery to be with Alisha.

When we entered the nursery, we noticed our children's pediatrician, Dr. Szkodzinski, on the phone. Someone explained to us that he was making arrangements to have our daughter flown to Crouse Irving Memorial Hospital in Syracuse, NY where they could better care for Alisha's defect. Alisha was blue and cold from lack of oxygen. Nurse, Nancy Jardine, pumped for over an hour and a half, and got her heart rate and blood pressure to better levels. Around this time, respiratory therapist, Pam Ryman, and nurse, Nancy Forsyth, arrived from Syracuse via helicopter. Jill and I were asked to leave the room as they intubated Alisha. Neonatologist, Dr. Yoss came out with the unenviable duty of informing us of the severity of the situation. He said that while in Syracuse, Alisha would be on a ventilator to control her oxygen supply. If this didn't work, they'd put her on nitric oxide which carried some risks such as deafness. If this didn't work, as a last resort they'd put her on a heart/lung machine called ECMO. If on ECMO, she'd be on it anywhere from a few days to up to three weeks after which she'd either be recovering or will never improve. Around 5:30PM, Jill and I bid Alisha farewell. I kissed Jill goodbye after taking her to her private room at the end of maternity. Her mother remained with her. Jill had to stay because she had to heal some, and she needed monitored to ensure there was no post delivery infections.

I went home, and explained to my sons, Christopher and Matthew, that Jill delivered them a baby sister that was very sick, and that Mommy was just fine. I also explained to them what a diaphragmatic hernia was. Christopher, age 8, understood. Matthew, age 3, didn't quite get it at this point.

When I arrived in Syracuse around 8:30PM, my worst fears were reality. Nurse, Nancy Forsyth saw me arrive, and informed me that they were preparing Alisha for ECMO. Alisha did not take to the ventilator alone, nitric oxide didn't help, and the last resort was all that remained. I was introduced to Dr. Hingre, who informed me that this defect is often diagnosed ahead of delivery through ultrasounds. Jill had level-one ultrasounds at 18 and 22 weeks, and the defect was not observed. He informed me that diagnosing it ahead of time would be of little good, except to prepare us for the events to come. While in NICU, I positioned myself at the rear of the nurses' station in view of the ECMO room. The sight was simply awesome. The 15' x 20' room was crammed with about twenty people. The lights were out, and it was dark except for a couple flashlights and Alisha's table. There, four feet off the ground, lay Alisha on her back like Snow White sleeping in her bed with the light shining on her. She was so tiny. The scene was intense, and I felt so helpless 30 feet away.

When the lights came on, Alisha was on ECMO, and the whole nursery breathed a sigh of relief. Pediatric surgeon, Dr. Nicholett, informed me at my asking of the long-term risks associated with the road to recovery from a diaphragmatic hernia. She informed me that lungs, even constrained and undeveloped lungs, grow over eight years. She informed me of the risk of asthma during that time. She informed me of digestive problems associated with the hole in the diaphragm. Alisha would be in the hospital a couple months before she'd improve enough to go home. In the short term, she indicated that they'd wait several days before performing surgery on her for her hernia repair so that her heart got stronger and her lungs got better oxygenated.

Shortly after lunch the next day, Jill arrived from Binghamton. She was discharged that morning from Lourdes hospital, the day after delivering Alisha. She was in pain and bleeding, and she should not have been walking around, but she really needed to see Alisha. Her visit was brief, but very important to her, and she returned back to Binghamton to heal and provide our boys the attention they needed. Our plan for the next two weeks was for me to stay with Alisha during the week, and for Jill to bring the boys to Syracuse on the weekends to visit. We planned to switch roles after that, presuming that Jill was healed by then.

A few days passed uneventfully. Saturday morning, just before Jill and I left for the hospital, I received a call from Dr. Nicholett indicating that Alisha's hernia repair was moved up from Monday to that day at 1PM because her conditions were right, and a good staff was assembled. By 1:20, a procession to the operating room (OR) started. Her primary team of doctors, surgeons, nurses, and ECMO staff walked in step. Security had cleared the halls, and they had removed the carpet on the first floor to ensure that none of the casters on the equipment snagged during the route. About three and a half hours later, Alisha's team came back in similar fashion to how she left. There were more smiles this time. Dr. Nicholett briefed us a little later. Alisha had a very stable and uneventful surgery. She had virtually no diaphragm on the left side. She attached a Gortex patch to whatever tissue was available.

The next morning, Sunday, Dr. Nicholett called to state that the ECMO circuit was clotting, an effect from the previous day's surgery. A circuit replacement was necessary. By 11:30, the procedure was started, and an hour later it was completed with no complications.

The next few days went very well. Alisha was awake a lot, and she moved her hands and legs. She looked a lot like her brother, Matthew. It was at this time that I realized how beautiful she was. Her eyes really brought it out. They were big brown eyes, and they made me realize how much life was really there. She tracked my movements, and her reflexes seemed normal. By the end of Tuesday, Dr. Nicholett planned to take her off ECMO in the morning.

I got the call at 9:30AM Wednesday. Alisha's trial off ECMO did not go well. When they took her off, her oxygen levels dropped rapidly. Dr. Nicholett mentioned that I needed to be aware that Alisha may not come off ECMO. I said that she had to. She agreed. Despite the bad news, Alisha looked a precious as ever. Her eyes opened often and her reflexes were good. However, by Thursday, everyone noticed that her abdomen was swelling.

Friday morning, I got a call from a nurse who said that Alisha was bleeding internally, and that I should come to the hospital as soon as possible. When I arrived at the hospital, attending neonatologist, Dr. Bifano, informed me that an ultrasound confirmed that blood was filling her abdomen, and that the situation was very serious due to her being on blood thinners for ECMO. I called to have Jill pull the boys out of school and come to Syracuse. I told her the situation was grave. We met with Dr. Nicholett whom, after consulting with her colleagues, recommended that surgery be performed to find out where the problem was. After an hour an a half, Dr. Nicholett met us upon completion of the surgery and informed us that a bruise on her small intestine had ruptured. The surgeons were able to control the bleeding, but not stop it. So they brought the bowel to the surface to watch it closely. They were not able to remove it as they normally could due to the blood thinners in her system and the associated risk of bleeding. As after the first surgery, the ECMO circuit needed changed again due to clotting. It was completed successfully.

Sunday, Alisha was quite alert, and we took tons of pictures. The boys seemed to enjoy seeing her eyes open. After the boys' visit, I took them back to Binghamton while Jill stayed in Syracuse. After putting the boys to bed that evening, I spent hours scouring the Internet for information on diaphragmatic hernias. I had been without access for the previous two weeks, and I was glad I got on it. There was a lot out there.

The next few days were spent ventilating Alisha's lung in hopes that it would open up. It opened a little each day, leaving some hope despite the previously unsuccessful trial off ECMO.

On Wednesday, Pam Ryman, Alisha's ECMO coordinator informed us that Alisha's lung was not improving as it continued to have a lot of resistance, forcing the blood to be shunted to arteries without being oxygenated. There was concern that her lung passages were in a fixed state and would never take in oxygen. Later, Dr. Nicholett stopped by to state that she and Dr. Marr wanted to meet with us the next day. I knew it was bad news. She stated that Alisha did not take another trial off and that the four of us needed to set a plan. Jill and I needed to leave the hospital to grieve. I called our minister, Reverend Barry Downing and requested that he come up to baptize Alisha. He said that he and Reverend Janet would come up the next day.

The next day, Thursday, was a tough day. Reverend Barry and Janet arrived around 10:30AM for Alisha's baptism in the ECMO room. I felt a sense of wholeness on Alisha's behalf by having her baptized, and I was grateful for having her receive the sacrament. A little later, we had our meeting in the hospital conference room with Dr. Marr, Dr. Nicholett, Dr. Bifano, Pam Ryman and Bruce Searles. Dr. Marr indicated that Alisha's lung had opened the whole way, and that it still wouldn't take in blood for oxygenation. She indicated that they had done all they can do, and that by Saturday, recommended Alisha be taken off ECMO. I had previously asked the doctors about the feasibility of a lung transplant, and I asked them what they found out. Dr. Nicholett indicated that fetal organs are very hard to come by, and that Boston, Philadelphia, Pittsburgh, and several other hospitals would not consider Alisha for transplant as her chance for survival was remote and her quality of life would be dismal. The hospital staff provided us with material on how to spend your last moments with your child, and we read a lot of it. We came to the realization that our dreams for Alisha were shattering. We hadn't lost hope for a miracle, but we knew a miracle was all we had left.

Friday was in many respects, the toughest day. Jill and I invited our parents, brothers, and sisters to come in town to visit Alisha before she died. We explained to our sons that Alisha was not going to live. As the day progressed, I became more depressed knowing that our time with our only daughter was drawing to a close. Jill and I didn't sleep well that night in fear of the events to follow the next day. We were scared as we envisioned a dreadful passing.

Saturday morning, we called Dr. Marr to find that Alisha failed her final trials off ECMO. When we arrived at the hospital, Pam Ryman and nurse, Helen Fisch, suggested that we bathe Alisha which we did with some assistance from Helen and nurse Beth Gibbs. It was a special moment. Then we dressed Alisha in an outfit and bonnet grandma Sharon bought her. Alisha looked precious all dressed up without the tubes and probes. At this point we felt it important for the boys and visiting relatives to see her this way as opposed to how they had seen her earlier. So we invited them in one last time, and everyone was very glad to see her this way. We took lots of pictures and video, and Alisha was very alert and aware of everyone around her. Then, around noon, everyone left and it was just Jill and I with her key hospital staff, Pam, Bruce, Beth, and Helen. Jill held Alisha in a rocker. I sat in a rocker next to her and held Alisha's hands and stroked her face as she was weaned off ECMO. The experience was very peaceful and nothing like the horror we imagined the night before. For about an hour, Alisha looked at us, gripped our hands, and rested with us as her blood pressure and heart rate slowly decreased and her body cooled. Jill and I cried hard, told her that we love her and will miss her, and bid her goodbye. It was an hour we'll treasure for the rest of our lives. At 1:27PM, Alisha's heart slowed to a stop.

Alisha died of pulmonary hypoplasia resultant from congenital diaphragmatic hernia. We had her cremated. We had a memorial service for Alisha the Saturday following her death. During the week, I prepared a photo album of the many pictures we had taken of Alisha during the nineteen days we were with her. I thought this would help put life to the name for the many people who attended Alisha's service, but had never seen her. Alisha's memorial service was difficult, but very beautiful. It's been two months since Alisha's passing. Our family thinks of her and views her photo album often. The healing is taking place albeit slowly. We love Alisha, miss her very much, and look forward to the day when we see her in heaven.


Written by Alisha's dad, Ed Swartz (New York)

November 29 - Dear Nicholas Sparks (Guest Blogger Jay Sum)

Dear Mr. Sparks,

The Lord lives. The Lord is good all the time. My faith and hope are in God. He knows what is best for us if we let Him work in us. I thank God for the wonderful daughter that was given to us. Her name was Haley Elizabeth. She was a beautiful baby who came into this world on March 1, 2001, at 5:06 P.M., weighing 6 lbs. 12 oz. at Northside Hospital in Atlanta, Georgia. She came into this world “crying” just as any other newborn. She looked perfectly normal on the outside. However, the inside of her was not right. She had a condition called a congenital diaphragmatic hernia (CDH), which caused her stomach and part of her intestines to move up into her chest. This did not allow her left lung to fully develop. We had found out about this condition two weeks earlier, but the doctors (pediatric surgeon, OB, and perinatologist) were all very hopeful that they would be able to correct this problem.

Almost immediately after Haley was born, the neonatology team went to work on her to help her breathe with the one good lung (right lung) that she had by putting her on a respirator. The team then took Haley upstairs to the NICU to “stabilize” her.

At around 7:30 P.M., Joan Maples, the nurse who had been with us since 8:00 A.M. that morning to help deliver Haley, contacted the NICU. Joan indicated to us that Haley would have to be transported by ambulance to Egleston Children’s Hospital, which is about 30 minutes south of Northside Hospital. However, Joan did tell us that they would bring Haley to Robin’s room to see us before she was transported to this other hospital. We waited with eager anticipation to see her, and I was hopeful that her condition was good because the neonatologist explained to me earlier in the day that it could have taken a long time (24 hours or more) for her to be “stabilized” before she could be moved so that she could survive the trip. At that time, I thought this was “good” because she was to be moved so soon after her birth.

Finally at around 8:30 P.M., Haley was brought down to Robin’s hospital room and then taken afterwards to Egelston by ambulance. I followed her to the hospital to ensure that she made it there safely. Once I made it to the hospital, I found my way to the NICU. One of the nurses directed me down to the admissions office, where I had to complete the obligatory insurance paperwork. After this, I went back upstairs to the NICU. The nurse told me that the doctors were not finished evaluating Haley, so I went into the waiting room at around 10:00 P.M.

At 11:00 P.M. or so that night, the doctors came to me and asked if I wanted to see Haley. I was somewhat nervous but excited and went to see her. She was connected to a respirator and a bunch of other tubes. One of the nurses told me at that time that Haley was “very, very sick..” This sort of surprised me, because I knew there was a problem and thought that she was referring to the CDH. However, the tone of her voice made it sound much more serious. The doctor (Dr. Anthony Piazza) who examined Haley then came to me and wanted to talk to me and Robin immediately. I explained to him that Robin was still at Northside Hospital recuperating. Because Robin was in no condition to travel, I asked him if this could wait until the morning, and he said, “No.” I think at that time, I went into a state of “shock,” because I sort of sensed that the things he was going to tell us were not positive. Dr. Piazza and the nurses then led me into a private consultation room where we called Robin. The first thing that Dr. Piazza asked us was, “What did the other doctors tell you?” At first, I didn’t really understand why he was asking this and didn’t know how to answer. I thought to myself, “The perinatologist said that Haley would be fine; don’t you already know this?” Dr. Piazza then went on to explain to us that not only did Haley have the CDH, but she also had a problem with her heart. When I heard this, I don’t think that I wanted to believe it. “No one told us this before…,” I thought. The doctor then explained that because Haley had both conditions (the problem with the diaphragmatic hernia and heart) there was nothing more that they could do. Haley would not be able to survive on her own, and it was only a matter of time…

I then asked Dr. Piazza if Haley would make it through the night so that Robin could see her. Dr. Piazza indicated that she probably would be OK. Naively, I thought to myself, “Maybe things will turn around, and she will be better in the morning.” I didn’t really know what to do. I felt helpless because I couldn’t fix it or change the situation. After this, I went back to Haley and prayed with her and dedicated her to the Lord. I told her that Mommy, Emily and Daddy loved her. I then drove back to Northside Hospital around 1:00 A.M. to be with Robin. On the way back to Northside Hospital, I listened to a song called “Enchanted,” which I dedicated to Haley.

Haley had taken a turn for the worse early in the morning, and the NICU team had to revive her. Robin and I went to the hospital to be with Haley at around 6:30 A.M. but did not know what to expect. When we got there, even though she was connected to the respirator, she looked very good. I asked Dr. Piazza again if there was anything that could be done, and again he told me that it was “inevitable” and only a matter of time. The doctor then asked if we wanted to hold Haley. At the time, I didn’t want to, because I didn’t want to hurt her… But I did end up holding her for several hours and was so glad that I did. Even though it was very hard, I was grateful that I could be with my daughter at that time. We were able to pray, sing, and read some children’s books to her. I really believe that little Haley knew that her mommy and daddy were there and that we loved her.

At around 11:00 A.M., Friday March 2, 2001, Haley went to be with the Lord. At that moment even though the sorrow Robin and I felt was insurmountable, I felt somewhat at peace and very grateful that I was able to spend the time that I did with her and to be able to hold her.

“And He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away” (Revelation 21:4).


Written by Haley's dad, Jay Sum (Georgia)

November 27 - Dear Nicholas Sparks (Guest Blogger Kristen Stiner)

Dear Mr. Sparks,

I was told at 19 weeks, something was wrong on the ultrasound, therefore, I was sent to an off base hospital for a level 2 ultrasound where it was diagnosed as a CDH. Devastation set in......we were advised to terminate...... unwilling to do that, I decided to carry her to full term and take the chance.....I had heard of the in utero surgery, but the doctors would not tell me where to go or how to get it done, I should have looked more into it....I went into natural labor just a little over 38 weeks, it was a short labor.....I was prepped for a C-Sec. just in case she went into any distress, she did not, but she did turn breech, so C-Sec. was only option.....she took one breath with a cry than they had to ventilator her....for 17 days, she was up and down, then when she was doing her best they decided to repair the hernia....she sailed right thru it. They tried to get her off the vent once she failed. She extubated herself once, she failed, then at about 3 months old she again sailed right thru an extubation...... she remained on oxygen. Soon she needed another procedure, we were transported to Children's Hosp...where she entered a Cath lab to close her PDA valve in her heart..they were trying to reduce her pulmonary hypertension......she sailed again right thru it, she did great, the procedure was a success. At that point we returned to University Hosp, where they watched her progress. Finally the end was coming in sight. At 4 months we got the best news ever, she was able to come home soon. That was Sept. 29th, she came home Oct 8,1999......her first doctor visit was that following Tuesday, she was doing great, got her 4 month shots and was doing fine.......the morning of Oct 16, 1999, she woke up fussy as usual at about 3 a.m. My mother was here for a visit, so she took her first shift......I got up with her at 6 am to relieve my Mom, my husband gave her her meds and we took her to the living room, she was still fussy, so we changed her nose cannula, and I just held her.......she started calming down so I laid her down on the couch in front of me she looked up took her last breath than passed.....we tried CPR, the ambulance came and rushed her to the hospital....a hour later she was pronounced gone....... we are still trying to recover, my son who is 4 still is very confused and doing what he can to make mommy feel better.....she is buried in Colorado where we are from, and has a great view of the Rockies, she is at peace and that is the most important thing.......She is missed yet we will see her again soon. That is her story.


Written by Kaylyn's mom, Kristen Stiner (Nebraska)

November 21 - Dear Nicholas Sparks (Guest Blogger Alex Bundy)

Dear Mr. Sparks,

I found out I was pregnant towards the end of 2007 shortly after finishing school. The beginning of my pregnancy seemed normal, like any other normal pregnancy would. When I was 20 weeks along I had my first ultrasound, where we were so anxious to find out the sex. Instead we found out that our baby had something wrong. I was referred to high risk specialist in Virginia and continued my care there for the remainder of the pregnancy. They informed me that our baby had CDH. We had no idea what that was and spent the next several months researching and learning everything we could about it. There was, of course, no way of knowing what was going to happen. I had many ultrasounds and stress tests done, nothing seemed to worsen, but nothing was getting better either. I was told I would have to give birth at another hospital in case we needed the ECMO machine. While her father and I were at home putting her crib together in anticipation to bring our sweet girl home, we got the call that the doctors wanted us to travel to Duke to be induced there. I was only 37 weeks, but they did not want to risk me going into labor on my own and not being able to get her the help she might need on time. We got to the hospital on May 14th 2008 around 6pm where they started the induction. I stayed in labor for an entire day before I was dilated enough to start pushing. I was wheeled into the OR to deliver, and after only 30 minutes of pushing this beautiful 5 lb 15 oz little girl was born. She was immediately taken to another room, and we later found out she had to be placed on the ECMO machine, or she would not have made it through the night. She fought for two weeks and did very well until she was able to be weaned off. For the following two weeks she remained on a jet ventilator where she continued to fight. On June 13th, after a month of holding our breaths, we realized that Riley would never be strong enough to endure the surgery that she needed. She was removed from all machines where she peacefully slipped away in her mothers arms around 1:00 AM on June 14th 2008.

-Alex Bundy, Rileys mom. North Carolina

November 20 - Dear Nicholas Sparks (Guest Blogger Theresa Hohman)

Dear Mr. Sparks,

My due date with our second child, Tierney, was January 24, 1992. My pregnancy was very normal in all respects and I had the usual ultrasound at 20 weeks with no abnormalities shown. January 24 came and went with no sign of Tierney coming into the world yet! At 41 weeks I had another ultrasound and a stress test that indicated no problems. On February 3 I went into labor and after a fairly short labor Tierney was born. Tierney, at 6 lbs. 12 ounces, was smaller than we expected for an overdue baby but appeared perfectly normal and had very good Apgar scores. 

On the morning of February 4 I was getting ready to go home when our pediatrician came in to see me. He said that a nurse thought she heard Tierney’s heart on the right side rather than the left and therefore they had x-rays taken of her chest. He pulled the x-ray out and showed me that her heart was indeed on the right side of her chest and her intestines were where her heart should have been. I asked him what this meant and he said he had never seen this before but that a surgeon would be in to see me. I was devastated! 

The surgeon, Dr. Croitoro, came in and told me Tierney had a diaphragmatic hernia and needed an operation to repair it. I was more than upset and very confused but Dr. Croitoro assured me that Tierney was very lucky because her lungs were perfectly okay. He said the hernia may have been caused very late in my pregnancy and he even discussed viewing my ultrasound to see if it was apparent at such time (I don’t think he ever did this). 

Tierney’s operation to repair her diaphragmatic hernia was performed by Dr. Croitoro on February 5, 1992. The surgery went well and Tierney recuperated in the PICU. She looked so relaxed and I can remember her sucking her tongue in her sleep. Tierney needed very little medication and was sent home earlier than expected on February 9, 1992. 

The 1st 6 months of Tierney’s life were pretty uneventful. I breast fed her and she thrived very well. She did have a tendency to vomit on occasion but I thought it was from overindulging herself with milk. When Tierney was 6 months old she started to have bouts of severe vomiting and abdominal pain. After several visits to our pediatrician and finally a visit to the hospital for dehydration, we were told she had reflux and she was put on two different medications. We were relieved to hear a diagnosis and to have a solution to the problem. Our relief was gone shortly as she started vomiting again and her pain seemed to intensify. We spent many nights walking with Tierney as she only seemed comfortable when you held her upright and she did not like us to sit down. I even took her for late night drives in the car because my back would ache from carrying her. We had monthly visits with the Pediatric Gastroenterologist (PG) that diagnosed her with reflux and he assured us that Tierney would eventually grow out of having reflux. Many times I discussed her CDH with him but he said there was no correlation between her CDH and her current problems. Tierney’s weight gain was very slow and she became a very picky eater. We would go for a week or two with no problems when suddenly she would vomit for a few days in a row and would be extremely uncomfortable. On Tierney’s “bad days” she would sometimes hold a cookie (that she would normally love to eat) in her hand for hours on end! She knew she would like to eat it but she couldn’t because she felt so lousy! 

We continued to see our PG and Tierney had X-rays, ultrasounds. Upper GI’s, Lower GI’s etc. but nothing was ever seen to be abnormal. Tierney was put on IV liquids a few times for dehydration and was even hospitalized for a few days right after her 2nd birthday but the diagnosis was the same – REFLUX. 

In September of 1994 Tierney experienced a severe bout of vomiting and pain. She couldn’t even brush her teeth without vomiting. Her pain seemed to come and go and was so severe she would tighten up her legs and be straight as a board and then when she had a little relief her eyes would roll back. Perry and I decided we needed to get her to the hospital. Tierney was admitted but they had to rule out appendicitis and other things so they couldn’t give her pain medication. She was in such pain and no one seemed to know what to do so we finally called Dr. Croitoro’s office and they sent Dr. Donald Nuss to see her. He reviewed a recent upper GI and determined that she may have blockage caused by adhesions and she needed immediate surgery. 

Dr. Nuss operated on Tierney the very same night he examined her. After the operation Dr. Nuss told us Tierney was a very sick little girl and that her threshold for pain must be extremely high because she had a volvulus. Apparently her intestines never adhered to the stomach wall after her CDH repair and they were twisting and turning until they finally tied into a complete knot that could not untwist. Dr. Nuss told us that Tierney would have died if he did not perform the operation. Tierney was closely monitored in the PICU and after 24 hours Dr. Nuss operated again to perform a resection on her intestines. Tierney spent a few days in the PICU with a tube through her nose to drain the “gunk” in her stomach and was later moved to a regular room. After 2 weeks Tierney was well enough to go home. 

Tierney sometimes complains of stomach pain but for the most part she is a happy, healthy, well-adjusted child. We had one bad scare a few months after her surgery with severe abdominal pain but we found she had eaten a large amount of peanuts and she suffered blockage from the peanuts that she could not digest properly. We don’t allow her to eat peanuts but other than that she eats a normal diet. Tierney is now eight and is in second grade. She is on a swim team, participates in Brownies, Soccer and Basketball. In addition to Tierney’s older sister, she has two younger sisters and one younger brother. After reading several other stories we realize we are very lucky but we hope the potential for intestinal problems is not overlooked by doctors of CDH survivors in the future. We know Tierney could have been spared a lot of pain if a connection could have been recognized earlier in her life.


Written by Tierney's mom, Theresa Hohman (Virginia)

November 19 - Dear Nicholas Sparks (Guest Blogger Phyllis Smith)

Dear Mr. Sparks,

This is the story of our angel in heaven. Cherylynn Reneé Smith was born on September 5, 2001. My pregnancy was normal. Nothing unusual occurred. At least, that is what we thought anyway. All my tests were normal. Her ultrasounds showed only a healthy baby.

I was telling everyone at work that I'd have her on Labor Day. I only missed it by two days. I went to my doctor appointment like normal the day before she was born. My doctor said I was dilated to 3 and it was time for me to quit work. I called my boss and told him it was time for me to start my maternity leave.

I awoke the next morning as usual. I took our son, Michael, to daycare so they could take him to school. Michael was in kindergarten. When I got back home I made breakfast for myself. When I finished eating I got up to clear my dishes and that is when my water broke. At first I didn't think anything about it. With Michael, I felt a pop before there came a gush. There was no pop this time. So, I thought I just needed to go to the bathroom. I got cleaned up, and it happened 3 or 4 more times. I was running out of clean shorts by then. I called my mother-in-law to tell her my water broke. She left work to take me to the hospital. When I got there I had to check in and all the other things to go along with a delivery. I was pretty happy. I was finally going to get this over with. I was about to die from the heat.

I got settled in my room. Several friends came and went to check on me. I was on the phone constantly calling everyone. One of the nurses commented that she couldn't believe how calm I was - especially since I went from a 3 in dilation to a 7 in no time.

One of the people I called was my mom. She lives in Georgia. I had moved out to Arkansas in 1984 to attend Harding University. I met my husband the last year I was in college. I decided to stay when I graduated. I called my mom to let her know that her grandchild was on the way. Cherylynn made the 24th grandchild for her. I am the youngest of seven. She has gotten a lot of grandkids from us. That doesn't include step-grandkids, either. She has somewhere between 5 and 10 great-grandchildren.

The time came to get down to the nitty-gritty and have this baby. It didn't take long for me to have her. It was a shorter time than with Michael. Michael's delivery was hindered by the fact that his cord was wrapped tightly around his neck. Thankfully we have a very skilled doctor. If not for him, Michael might have either suffered severe brain damage, or worse. He very well could have died during childbirth.

Anyway, the time soon came for me to push. I think there might have been a total of 4 or 5 pushes and she was born. She was the most beautiful baby girl you had ever seen. She had a full head of black hair just like her daddy. Well, actually, she had more hair...on top, anyway. She looked just like him. She was all pink, and just beautiful. Michael was blue as a smurf when he was born.

She didn't cry when she was born. You could tell she was having some kind of problem. When the nurse couldn't get her to cry, my doctor left what he was doing to me and went to help her. They tried everything. They gave her shots of medicine. They gave her an external heart massage. They thumped her feet. But in spite of all that, all she could muster was pitiful little mews. I will never forget her sounds. I will never forget the struggle she had to try to breathe. You could tell something bad was wrong with her. When it was obvious that something bad was wrong my doctor told the nurse to take her to the nursery and to get her pediatrician over there right then.

The next 39 minutes were a slow motion blur. The nurses were running in and out of my room getting info from the fetal heart monitor. They were shoving papers in my face to sign. I'd try to get them to tell me how she was and the best I could ever get was that she was pinking up. Or that her doctor was working on her. My doctor said he'd find out what was going on as soon as he finished with me.

I will NEVER forget when he came back into my room after going to the nursery to find out what was going on. He told us that she wasn't going to make it. He told us that she had a diaphragmatic hernia. He said that from the chest x-rays her doctor had taken, it looked like her diaphragm had never formed. That was when the world came crashing down on me. If not for my son, I wouldn't have made it to the next day. All I wanted to do was curl up and die. I fought off strong urges to do just that for a while after she died. It was very hard. But, I couldn't do something like that to my precious son. He will never know just how much his mommy needed him then and still needs him now. Luckily, Ashley has provided help since she was born. I long to be with Cherylynn but I couldn't leave my precious children I have here on earth with me.

I think I may have hurt for Michael more than for myself. I didn't know what we were going to do. I knew it would break his heart. We thought at the beginning we were going to have another boy. So, we told Michael he was getting a baby brother. He was on cloud nine. When I had my second ultrasound we found out it was a girl. When I told Michael he was getting a sister instead, he cried and cried. It broke his little heart. But in no time he warmed up to the fact she was a she and not a he. He was soon so happy. He couldn't wait until she was born. Then, for this to happen was just not right for him.

His Aunt brought him to the hospital to see her. He didn't know she had died. Neither of them knew until they got there. One of the nurses asked if she could take him to see her. I let her take him to see her. I wanted him to be able to see her and tell her goodbye. I hurt for him so much. A five year old shouldn't have to go through something like that.

The next day when my doctor came to check on me I asked him if I had to stay until the next day. I wanted to get as far away from there as I could. He was reluctant to, but he went ahead and discharged me. We only live about four or five blocks from the hospital. He knew that if I had any problems we could be there in less than a minute. He also knew that I desperately needed to leave for my sanity. So, against normal protocol he discharged me only 15 or so hours after giving birth.

One of the worst parts of it all was having to leave the hospital without her. All I had was a box of items the Auxiliary put together for us. That is something they do in situations like that. It was just so wrong. I went in to have a baby and I left with nothing but a box. The nurses took a lot of pictures for us. They took pictures of her by herself, with her daddy, with her brother, with me, and with my mother-in-law. The hospital has a deal set up with a baby store in town to have the baby's footprint put on a plate which the parents can decorate, and they then put it in an oven to "cure" it. Of all the things I thought about during this time I asked if they still did the porcelain booty like the one I got for Michael. That is when they told me they were doing these plates. Well, I still wanted mine. I called the business and spoke to the owner. I told her what had happened and I asked her if she would be willing to go to the funeral home and get her footprint for me. She very graciously agreed. That was one of the most endearing acts anyone has ever done for me or my family. Just thinking about that is about to make me cry. I don't know the lady but that act has insured that I will always hold her in high regard. When I felt up to it I went to the store and decorated it. I bet I spent 5 hours working on that plate. I couldn't find an angel to put on it so she had her best friend who is pretty artistic draw one for me. That was another lovely act. That plate is one of the things I cherish most associated with Cherylynn. It has her precious footprint on it. I have it on Ashley's dresser. When Ashley was born I made one for her also.

We had Cherylynn's funeral on September 8. I can't deal with viewings so we combined the viewing with the service. A dear friend's husband did the service. Through the years they have done a lot for us. She performed our premarital counseling. He officiated at our wedding. In fact, our wedding was held in their lovely home. They have done a lot for us in the 20 years of our friendship.

My husband was scheduled for a vasectomy the following week after Cherylynn was born. My doctor told us to hold off on it until we had time to think about it. I was so hurt I told him we were not going to hold off. I was not going to get pregnant again and go through that horrific pain again. He told us to just think about it and if we decided to we could cancel it. He told us if we needed until the day of the appointment that was fine. I ended up calling and canceling the day before. He had originally been scheduled for one 2 weeks before she was born. I don't remember now why we cancelled it. I am just thankful that I changed my mind.

We were planning on waiting about four or five months to give me time to heal both physically and emotionally. Well, six weeks after Cherylynn was born I was pregnant. At six weeks and three days I miscarried. It was just too soon after her for my body to carry the baby. Six weeks after that I was pregnant again. That was the most stressful nine months of my life. I was so scared. My doctor sent me for a Level 2 ultrasound at UAMS in Little Rock to make sure Ashley didn't have a diaphragmatic hernia also. Much to our relief, she was perfect. They offered to do an amnio to check for Downs due to my age. We turned it down. We didn't care if she was born with Downs. We could handle that. Downs children can lead a fairly normal life. All we were concerned with was having a healthy baby that lived so we could take that baby home to love instead of a box.

Michael didn't care what this baby was. All he wanted this time was a baby to bring home also. He told me one night before Ashley was born that if this baby died she would go to Heaven to be with his sister, and if she lived we would bring her home. He said he didn't want her to die. That just broke my heart. He missed his little sister. He still does.

I guess we may never know why Cherylynn had to die. I believe in God, and I know that all things work for the good through Him. But I have a hard time seeing anything good with her dying. I do know that if she would have lived we would not have Ashley. I would not trade anything in the world for my baby girl I have with me right now. And on the other hand, I would give my right arm to have Cherylynn back. Not a day goes by that I don’t think about my precious angel. My heart will ache for her for the rest of my days. But, I know that she is in Heaven with God. I know that Jesus is watching over her. I know she is in the best place in the world. But knowing that will never close the gaping hole in my heart, nor soothe my aching arms that long so much to hold her. One day I will hold her in my arms and be able to love her forever and ever.

I know deep in my heart that God will never put more on us than we can bear. I just wish He wouldn't have so much "faith" in me. That is something I hope I never, ever have to go through again. It is just not right for a parent to outlive their child.

I still have pain when I think of her. I will until the day I die. I have gotten better. I have learned to laugh again, and live again. I have to for my son and my other daughter. They are the very life in me. But for the rest of my days my heart will ache for my precious Cherylynn. May she rest peacefully in the arms of her Savior, Jesus Christ. Mommy loves you with all her heart, soul and mind. One day I will join her and hold her for all eternity.

In loving memory of Cherylynn Renee' Smith, born September 5, 2001. Died September 5, 2001 after only 39 minutes of life. "Though your life was so brief, your memory will live on forever and ever. Baby girl, Mommy, Daddy, big brother Michael and little sister Ashley miss you so much. Our lives will never be complete until the day we can be with you in Heaven." "Our love for you will burn for all eternity." Mommy loves you and misses you so much. No words can adequately explain the love and emptiness in my heart. I love you forever and ever.

Michael is in 5th grade now. He still misses his sister and still has a hard time with the concept of death. Ashley will be 4 soon. Even though she was born 14 months after her big sister died she knows Cherylynn's picture and will tell you that is her sister in the picture.

Written by Cherylynn’s mom, Phyllis Smith (Arkansas)