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 27 - Dear Nicholas Sparks (Guest Blogger Paula Yerger)

Dear Mr. Sparks,

This is the story of our daughter Katie Elizabeth. She was diagnosed with a CDH moments after her birth, and then eventually with Fryn’s Syndrome. We had no idea she was so sick. We'd had the AFP and the ultrasound. Her heartbeat had always been good and strong. She was an active baby.

Katie was conceived in March 2000. We were extremely happy to learn we were expecting. Our oldest daughter, age 6 at the time, was excited to learn she would be having a brother or a sister. I had awful morning sickness. It wasn't just in the morning, it was morning, noon and night! I was sick for about 2 1/2 months. I hated the seasick feeling, but I loved knowing that it was a good sign of a healthy pregnancy.

At around my 3rd month, I started feeling uneasy. I was convinced that *something* was wrong. I expressed my concerns. My doctor assured me that everything was fine. I still couldn't shake my feelings. About my 4th month of pregnancy, I started feeling uncomfortable. I seemed to hurt more than I remembered with my first pregnancy. My family and I had gone on a quick family vacation to our favorite amusement part and I knew the walking was going to be tiresome, but several times during the day I would start hurting terribly, almost to the point it hurt to walk. I later realized that I could no longer feel when I had to use the bathroom. Emptying my bladder every hour or so would became my routine until I delivered Katie.

Shortly after we returned from our mini family vacation, I went in for an ultrasound. My husband was so excited to see her on the screen. It was confirmed that she was a girl! My husband was in awe when he saw her little heart, beating so strongly. The tech said everything looked good.

Looking back, I would have to say that there would have been 2 maybe three red flags: I insisted that I saw her *hand* clenched; she was laying on her other hand/arm; and the fact that even though she was an active baby, she seemed non-responsive to our pokes and prods to my belly, it would almost seem as if she was trying to run away from them. My OB confirmed that my ultrasound looked fine. There was no indication that she even had a CDH. He did mention that I had a mild case of placenta previa. Nothing was ever mentioned about this since.

Shortly after my ultrasound, around my 6th month, my husband and myself started to notice that I was getting big. I was big with my first daughter, but this time, I felt & looked bigger than normal. Even my OB commented how big I had become since my last visit. He didn't seem concerned about it. By the last 3 or 4 weeks of my pregnancy, I had to stop driving because I couldn't fit behind the wheel, nor could I sit comfortably to drive safely. It also hurt to walk. I couldn't get comfortable to sleep; I felt like I was a balloon and I was about to pop at any moment. I had strangers asking me if we were sure there was only one baby in there.

During the last week of my pregnancy, I saw records that indicated that I was measuring over 2 weeks larger than what I was. We took Katie 11 days early, making me 38 weeks pregnant, I remember reading a document that I was measuring at 41 weeks.

November 28 came very quickly. We arrived at the hospital for the scheduled c-section. I was prepped and wheeled down to the OR. I chose to be completely sedated for the procedure.

When I started to wake up in the recovery room, I just had that feeling that something wasn't right. Sure enough, when I started asking for my baby, the recovery room nurse told me that my baby was having problems breathing. My heart broke into about a million pieces. I remember thinking no, not again! My first daughter had some mild complications after her birth and I just couldn't handle going through this again. Unfortunately, that was nothing compared to what I was about to encounter.

I was back in my hospital room when the meds started to wear off. I remember asking for my baby and that I needed to see my baby. Immediately, people started telling me that they were working on her and that we'd know something soon.

I have to stop and mention that shortly after I had Katie, a nurse for some reason felt it was necessary to mention to me that I had an enormous amount of amniotic fluid. Had I known then what I know now, I would have insisted my doctor do a more extensive ultrasound.

Katie's doctor came in and started to tell us that she had a CDH. He was confident that it was a minor tear in her diaphragm, and that he was almost confident that her lungs were fully developed and that this was something that happened when she took her first breath. He life flighted her to Children's Mercy hospital in Kansas City, MO. There, we learned that she had, in addition to her CDH, several other anomalies, hence leading to the tentative diagnosis of Fryns Syndrome...we're still waiting confirmation through the autopsy report. We also learned that her lungs were not completely developed; in fact, one was almost nonexistent and the other was significantly under developed. Once we learned the severity of her medical condition, we decided to disconnect her life support November 29, 2000. Katie died in my arms.

She looked absolutely perfect. She was beautiful. It's so hard to understand why this happened to her. I never heard her cry, I never saw her open her eyes to look at me. Fryn’s Syndrome cannot be detected in an amnio because they have not found the DNA link yet; and as we're all too familiar with, detecting a CDH on an ultrasound is difficult. There are other anomalies that could be detected on an ultrasound if the tech is trained well and knows what to look for, but unfortunately the outcome doesn't change. Fryns Syndrome is a rare genetic disorder. Majority of the babies born with Fryn’s are stillborn, and the few that are born alive are on life support and will be mentally challenged.

My husband, my daughter and I sat and held Katie for a long time. Shortly afterward, my daughter dressed Katie and helped present her to our families. And, then shortly after that, they brought her back to me and I continued to hold her for several more hours. I stroked her little head, smelled her hair, patted her back and just rocked her. I told her how much I loved her and how much I wanted her. I sang to her, I looked at every inch of her body. I had to cram a lifetime into a few hours. I just held her. I sat there and cried for her, my tears spilled over her little head. I wanted to take her home with me so badly. I was her mamma, why couldn't I make everything all better. I just didn't understand. My husband and I held her and held each other, together we cried. It just wasn't supposed to happen that way.

We had Katie cremated and we brought her home. Katie's signature color is purple. It also happens to be my favorite color. When I see the color purple, I feel comforted in knowing that even though I only knew my daughter for such a short time, we had something in common.



Written by Katie’s mom, Paula Yerger (Oklahoma)

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 8 - Dear Nicholas Sparks (Guest Blogger Jennifer Jenkins)

Dear Mr. Sparks,

When I was 27 weeks pregnant, I went in for a routine checkup, and my doctor was alarmed at the size of my belly. I was measuring around 32-33 weeks, so she sent me to the hospital to have a level 2 ultrasound done, (hoping to find out the sex), and we found out that our baby "girl" had a congenital diaphragmatic hernia. I was hysterical! They immediately sent us to a high-risk doctor, and he explained to us our options. His first suggestion was to terminate the pregnancy. To me and my husband, that was not even an option, so instead he wanted to do an amnio to find out if it was a genetic problem. So we did the amnio, and from there, we were sent to the ECMO coordinator in the NICU. She explained to us what was going to happen when our baby was born and then gave us a tour of the NICU.

I began doctor visits twice a week for ultrasounds to measure the amniotic fluid index and have non-stress tests. In that first week, I was contracting at a regular rate, so my high-risk doctor said we needed to do an amniotic reduction to help stop the contractions. During the reduction, I went into labor, so I was put on meds, and it was eventually stopped, and I was allowed to go home with orders of strict bed rest (not an easy task with a 2 1/2 yr-old at home). My son and I spent our days in my air conditioned bedroom watching Disney movies and taking naps.

I was still having the contractions off and on, so they decided to induce at 37 weeks so that the team of doctors would be prepared for her arrival. Well, Bethany had other plans! She came at 36 weeks. I went into labor at 2:00 A.M. Monday morning and completely denied I was in labor because it wasn't very strong, and I just didn't want to believe it. I felt that as long as my baby was inside of me, then she was alive and with me. At 5:30, my husband woke up to get ready for work, and I was wide awake and in the middle of a contraction. I told him to go ahead and go to work, and I would call him if anything happened. By 7:30 A.M., I knew it was the real thing. So I called my husband and then called my sister to watch my son.

We got to the hospital at 10:00 A.M., and the contractions were definitely there but still nothing compared to what it was like with my first. They hooked me up to a monitor and were convinced it was false labor, that is, until they did an exam. They found that my water was literally bulging and about ready to burst at any moment. I was completely effaced and had begun dilation. They told me to walk around for an hour and then come back. They were afraid my water would break, so they instructed us not to leave the hospital.

We came back at 1:00 P.M., and the nurse examined me again. I had dilated even more, and my water was even closer to being a waterfall. The nurse got my records and knew that our baby was sick, so they cleared out what they call the "Cadillac room" and put me in there. It was like a luxury suite! They treated me like I was so fragile.

They gave me an epidural at 2:30 because they wanted to be prepared for an emergency c-section. At 4:00 P.M., my doctor arrived, and I apologized for not waiting until the induction date. She laughed at me. My labor was now very hard when I had a contraction, but the contractions were still very slow, and Bethany was showing signs of distress. So my doctor gave me pitocin to speed it up. At that point, my mom and hubby were in scrubs ready to go to the OR for delivery, and they had made a bet on what time Bethany would be born. My hubby guessed 6:45, and my mom guessed 6:55. Well, at exactly 6:55 P.M., Bethany Michelle Jenkins was born. I only caught a glimpse of her as they cut the cord and rushed her off into the resuscitation room. She was very gray and didn't even look alive at all. My husband was allowed to go with her, and my mom stayed with me to keep me calm.

I had some problems with hemorrhaging and lost a great deal of blood, but they were finally able to get that under control and stitched me all up. Because of the hemorrhaging, I wasn't allowed out of my bed, even to go see my daughter. So I relied on updates from my husband and the neonatologist.

About 10:00 P.M., the neonatologist came into my room with a solemn face and told me that we needed to start thinking about funeral arrangements because he didn't feel that Bethany would survive the night. I was devastated! I hadn't even seen her yet! My husband stayed at her bedside most of the night and kept me posted on her condition. The next morning her condition had improved somewhat, and she was still with us. They allowed my husband to wheel me in to see her. I thought I was prepared for what I was about to see because I had toured the NICU twice before she was born. But it turned out that it was very different because it was my own child hooked up to all those machines. I think what bothered me the most was the high frequency ventilator making her chest vibrate so violently. I was only allowed to stay for a short time, and when I got back to my room, I bawled and prayed!

Bethany had her ups and downs through that second day and through the night. But by 10:00 P.M. the following night, they decided that she was stable enough for her life-saving surgery. Before her surgery, we had her baptized and then off she went. After her surgery, the doctor came in and told us that she probably wouldn't be awake until the following morning and that they had given her some paralyzing medicine so she wouldn't be moving at all until at least then. Ten minutes after we talked to him, we went in to see her. (They had closed the NICU and did the surgery right there in her bed). When I talked to her, she opened her eyes and stared at me! And when I held her little hand, she squeezed my finger! She was such a little fighter!

The remainder of her hospital stay was touch and go. The first time they tried to extubate her, we were there. They waited for what seemed like an eternity for her to start breathing on her own, but it wasn't flying, so they bagged her and reintubated her. It broke my heart. About a week after that, I was at home resting with my son, (they made me go home to sleep), when I got a call from the neonatologist. He called to tell me that Bethany was off the vent and doing well! She was on a nasal cannul but pretty much holding her own! What an achievement! I was so excited! I went to the hospital, and for the very first time, was able to hear my baby cry. What a sweet, sweet sound!

A few days after that, she swelled up like a big balloon, and her blood pressure went sky high. So her BP meds were upped, and she was put on diuretics to get rid of the fluid that she was retaining and causing her to swell. They got that under control, and then they cut her narcotics off cold turkey! That didn't go well at all! She cried and cried from withdrawals. So they ended up putting her back on them to slowly wean her off. To make a really long story short, Bethy was eventually put on feeds through a Gavauge and then was able to nurse. Then one day when I came in to visit her, the doctor came in and asked me how I would like to take my baby home! He said that he wanted me to "room in" with her that night in a special room, and the next day they would release her. Ohhh, what a happy day!

Bethany is now 3 1/2 years old and doing fairly well. She has some bowel problems, reflux, and if she gets too active, she has some breathing problems. But those are so small compared to what she went through just to be here today! Her development has not suffered at all. She is in pre-school and absolutely loves it! She’s writing her name and starting to spell words, and she is the sweetest child, always thinking of other people before herself. My little angel! Anyway, that is Bethy's story in a nutshell.


Written by Bethany's mom, Jennifer Jenkins (Washington)

November 30 - Dear Nicholas Sparks (Guest Blogger Mary Iacobucci)

Dear Mr. Sparks,

I became pregnant with my first child in winter of 1995. What a wonderful time it was (at least for the first 6 months). My husband and I had been married for five years and couldn't wait to start our family. We had our first ultrasound at 20 weeks and everything seemed fine. We were told we were having a boy and immediately named him Anthony Urban. My husband's name is Anthony, and my late father-in-law's name was Urban. It was perfect. Everything seemed to be going along normally for the first 6 months of my pregnancy. I was enjoying the attention I was getting and loved being pregnant. I was working full-time as an administrative assistant for a large steel company in Cleveland. Life was good!

One day at work I went into the bathroom (as we all do several times a day during pregnancy) and noticed some spotting in my underpants. I immediately called my doctor, and she wanted to see me right away. I wasn't too worried at that point, but I cleaned off my desk because I had a feeling I might not be going back to work for a while. When I got to the doctor's office, she gave me an exam and said she thought I had a clot on my cervix, but that I needed to go to the hospital for more tests. I called my husband from the doctor's office and broke down crying. I couldn't believe something was going wrong with my pregnancy. This wasn't supposed to be happening. My husband met me at home and we headed to the hospital. When we got there, we went to the labor and delivery floor, and they immediately hooked me up to a fetal monitor. The baby's heartbeat was strong and steady. I was starving, but they wouldn't give me anything to eat. After several hours there, they said I would need to spend the night and have an ultrasound the next day. After I got checked into my room, my husband left, and we had a tearful goodbye.

The next morning my husband came back to the hospital, and we went for our ultrasound. It seemed to take forever. The technician really took her time. She did have a strange look on her face. She left the room and went to get a pediatric cardiologist. We were so scared. Could something be wrong with our little Anthony? He came in and continued the ultrasound. Afterward he told me to get cleaned up and that he wanted to talk to me and my husband in a private room. After he left the room, I lost it. I knew it was very bad news. He explained to us that our son had a hole in his diaphragm. He said it appeared to be a small defect, but that it would require surgery as soon as possible after he was born. We were in shock! I wouldn't be bringing my baby home with me. That wasn't right. What did I do wrong?

I got back to my hospital room and broke the news to my mom and dad. They were devastated. Then my mom began to call relatives to let them know what was going on. During all of this, everyone seemed to forget about the spotting I had. The next day, my ob came in and said I could go home. I was so happy. I just wanted to go home. A few minutes later, she came back and said I wasn't going anywhere. I had placenta previa. My placenta was blocking my cervix and causing the bleeding. This condition would require strict bedrest and regular ultrasounds to see if it would improve. I had my husband go home and pack me a bag of clothes and personal items I would need.

I spent 7 weeks in the hospital on very strict bedrest. I had several bleeding episodes and got more scared with each one. I was told it was critical that I keep this baby inside of me as long as possible to increase his chance of survival. A pediatric surgeon met with us as well as a neonatologist. They both explained to me what would be happening once Anthony was born. He would have quite an uphill battle and so would we.

On March 10, 1996, my OB performed an emergency C-section on me. I was 36 weeks pregnant, and the bleeding had gotten worse. If they didn't do it now, both mine and my baby's life would be in danger. Anthony was actually born at 12:01 am on March 11, 1996. He weighed 7 lbs, 4 oz. Quite big for only 36 weeks! He already had size on his side. They whisked him away to the NICU, and I didn't see or hear him. By the time they got me sewn up and to the recovery room, I was exhausted. My family members came in to see me, but I made them all go home. It had been a long night, and there was nothing they could do. I spent 14 hours in recovery with excessive bleeding and had to receive 2 units of blood. My body was traumatized and so was my mind.

Anthony had his first surgery at 1 day old. The surgery itself went well, but the defect was much worse than they thought. He had virtually no diaphragm on his right side. Luckily his liver had prevented other organs from going into his chest, and he had a full lung on the left side and a half lung on the right. That was a lot more lung tissue the doctors would have predicted for such a large defect. This was great news. His first night post-op was very rough. The next morning the doctors began talking about ECMO. But a wonderful NICU neonatologist was patient. She said Anthony needed some time to recover from a very invasive surgery. She was right.

Eventually after a few weeks, Anthony was able to wean down on his ventilator. He did spend some time on the oscillator and nitric oxide. The oscillator really helped him. He spent 6 weeks in the NICU. He had a lot of trouble coming off the vent. Every time they tried, it would last a few hours and then his stats would drop. It was so frustrating. I remember one time when they tried; I was holding him, and I didn't want to let go. I didn't even realize that he was turning blue in my arms. It was as if he and I were the only two people in the world, and I couldn't hear the nurses trying to tell me he needed to go back on the vent. I guess I really didn't want to hear that.

After 7 weeks in the hospital, we brought Anthony home. Everything seemed to be great. I did begin to notice that he was turning quite blue when he cried and that he wasn't putting on any weight. We brought him for a checkup on July 31, 1996, with the surgeon and were informed that his hernia was back. They performed surgery on him that day and the roller coaster ride started again. This time he tolerated the repair very well. By the way, they inserted a Gortex patch inside his chest. I forgot to mention that earlier.

It was a few days after the surgery while he was in the PICU that I noticed a lump on his abdomen. It turned out to be a bowel obstruction and once again he needed to go under the knife. This time Anthony had a very rough time. It had only been a few days since the re-repair and his body didn't like being opened up again. He was bleeding very badly from his abdominal wound. This was the first time I saw a worried look in his surgeon's face. My husband and I prayed and prayed and prayed. We called our friends and family and asked that they start a prayer chain for our son. At the end of the day we went home with heavy hearts. That night we got a call at 4:00 am from the nurse, telling us that we should get to the hospital because they couldn't stop the bleeding. We rushed down there, and I sat by my son's bedside. I sang to him and read to him. My husband went to visit his father's gravesite and then to church. When he came back, Anthony began to make a turnaround. By the end of the day, Anthony's bleeding stopped. It was truly a miracle.

As a result of the surgery, Anthony had a colostomy for a few months. The doctor wanted to give his bowel some time to rest. We brought Anthony home in mid-August once again. This time he was great. No turning blue. He had his colostomy reversed in October and was home in 2 days. What a difference!

We just celebrated Anthony's 6th birthday last week. I can't believe it. He still sees his surgeon twice a year and gets an annual MRI to check his chest wall measurements. They think that at some point in the future he will need another surgery to replace the Gortex patch with a larger one. I try not to think about that too much, though. I just enjoy every minute I spend with him. He is in kindergarten and is thriving. He plays on the soccer and baseball teams in our town. I only dreamed of these days 6 years ago and now they're my reality. We also have a beautiful 4 1/2 year old daughter. I got pregnant with her when Anthony was only 9 months old. We really didn't plan it that way, and I was scared to death that something might be wrong with her, too. But she was born perfectly healthy. I'm glad I had her so soon after Anthony. It really helped me heal to know that we could have a healthy child and that I didn't do anything wrong.

God bless each and every one of you. We are all part of a family. We share a bond that can never be broken.



Written by Anthony's mom, Mary Iacobucci (Ohio)

November 18 - Dear Nicholas Sparks (Guest Blogger Lisa Hoewing)

Dear Mr. Sparks,

We were diagnosed with CDH at 18 weeks through a routine ultrasound. I was not having any problems; we just wanted to know the sex of the baby.

After diagnosis, we saw a specialist every 4 weeks to check on the progress of his hole. It appeared that our son had a left-sided hernia with stomach and a loop of bowel in his chest cavity. Both lungs could be seen, however the size of the left lung was unclear. We live in Central Illinois, and our hospitals were unable to handle the CDH repair. My husband and I researched hospitals with successful CDH repairs. We chose Children's Hospital after meeting with the surgeons and touring their NICU. We felt very comfortable with the quality of their facility. They also had the ECMO machine, which we had been told that our son might need.

On February 2, 2002, I gave birth to Aaron Jacob Hoewing, weighing 8 lbs 12 ounces and 22 inches long at 6:37 PM. The delivery was a 39-week induction, and I delivered Aaron vaginally with help from the vacuum suction. I had a pretty normal pregnancy until the last 3 weeks in which I had excessive amounts of fluid, which is sometimes common with CDH babies because they are unable to take in as much amniotic fluid. He was delivered at Barnes Jewish Hospital in St. Louis, MO across the catwalk from Children's Hospital. When Aaron was born we heard a faint cry that sounded like a little lamb. My husband and I were excited because we had been told previously that he would not make a sound. He looked so beautiful and healthy on the outside that it was hard to believe that there was anything wrong with him. He was immediately intubated and placed on medicine that kept him paralyzed. His Apgar scores were 2 and 7. His initial heart rate was 46. CPR was begun, and he was then stabilized. We were told that we could gently touch him but not to stroke him. We held his hand and took quick pictures before he had to be whisked away. I told my husband and family to go with him while I waited for my epidural to wear off. The NICU doctor called me immediately after Aaron was admitted to tell me that he was stable and that they would watch him carefully through the night and would meet me in the morning.

I finally got to see my son the next morning. He was still on a regular vent but at very high settings. I was not allowed to hold him. Later that day Aaron was switched to a high frequency vent called an oscillator. The next day Aaron was put on Nitric Oxide, which he remained on through his surgery.

The surgeons came by to check on Aaron every hour. I did not know how sick our son was; we thought this was normal procedure. The surgeons postponed Aaron's repair until they felt that he was stable enough to handle the surgery. The repair was done when he was 5 days old in the NICU because they were unsure whether Aaron would handle being moved to the OR. The entire NICU had to be shut down for our son's surgery. We felt terrible because that meant that other parents could not see their children during this time. We found out later that surgery had never been done in the NICU before Aaron.

The surgery was a success. Aaron had enough muscle in his diaphragm that he did not need a gortex patch. His stomach, spleen, and loop of intestine had been put back where they belonged. The surgeons informed us that the surgery was just a small part of the entire CDH recovery. Aaron was not out of the woods yet.

On Feb. 19th, Aaron was placed back on a regular vent. WE FINALLY GOT TO HOLD OUR SON!! They took off the paralyzing medicine. We were beginning to see movement for the first time. Each activity was a big deal to us. The first time his foot moved, eyes opened, wiggled his fingers-- it was good medicine for both our son and for us. Aaron began recovering very quickly. His settings were lowered each day. On March 6, 2002, Aaron was extubated!

He was put on C-Pap for two days and then finally to nasal plugs at 30% oxygen. His medicine was switched from IV to oral medicine. We were able to try feeding him from a bottle on March 14, 2002. He seemed to have an oral aversion. The nurses explained that this was normal for babies who had been as sick as our son was. They have never had anything good put in their mouths before so naturally they hate anything put in it.

We worked on feeding issues for the next couple weeks while Aaron continued to get stronger each day. He was weaned from all medicines and taken off oxygen on March 28, 2002. We were able to take Aaron home on April 10, 2002 without ANYTHING!! He is presently on no medication or oxygen. To look at our son you would never know that there was ever a problem. He weighs 12 lbs 5 ounces and is 23 inches long. He is a happy baby, always alert and smiling. Everyone comments on how alert he is. We have Occupational and Physical Therapy that come to our house one time a week to work on range of motion activity. Since Aaron was paralyzed for so long, some of his muscles became stiff.

We know that Aaron's success is from the many prayers that were prayed on his behalf. We had several churches praying for our son ever since we were diagnosed. We believe that God has a special plan for our son. We are excited that we will get the chance to witness our precious cherub grow and become the man that God intended him to be.

Sincerely,
Aaron's mom, Lisa Hoewing (Illinois) 

November 6 - Dear Nicholas Sparks (Guest Blogger Heather Fuhr)

Dear Mr. Sparks,

Hi, I am Heather Fuhr. My fiance, Troy Halter, and I had our third baby on August 25, 2002, at 1:00 a.m. in Madras, Oregon. My pregnancy was normal, except for the fact that I have a heart problem. When our daughter, Taylor-Lynn Faith Halter, was born we didn't know there was anything wrong with her. She wouldn't breath on her own, so the doctors took her away. My doctor came and told us that they thought her heart was on the wrong side. They intubated her and took X rays to make sure they got the tube in the right spot. When they did, they found her congenital diaphragmatic hernia. It was on her left side. The doctors decided to call in life flight since where she was born wasn't equipped to handle her hernia. They picked her up at 2:00 a.m. and flew her to Portland, Oregon to Legacy Emanuel Hospital. There they put her on a ventilator, nitric oxide, versed, fentenal and dopamine.

When she arrived at the hospital, they had her on a normal ventilator, but a few days later had to be put on a high frequency ventilator. She had pulmonary hypertension, systemic hypotension, pulmonary hypoplasia, and respiratory failure. This whole time all we got to do was look at her. We didn't get to hold her, not even after she was born. On August 28th, she had surgery to repair the hernia. It was supposed to last two hours-- it lasted four hours. Troy and I sat on pins and needles the whole time. When they finished, the surgeon came and told us that they got everything back, and they did not have to use gortex to patch it. There was enough skin to fix it. But they did tell us that her left lung was the size of a half dollar and her right was much smaller than it should be, but not as small as the other. We were told that she was fine otherwise. She had to have one blood transfusion and one does of exogenous surfactant. She was able to come off the nitric oxide on September 7th. She was then taken off the ventilator on September 10th.

We finally got to hold her two days later. She had a nasal canula, but other than that she looked okay to us, and we thought we could take her home soon. Boy, were we wrong. We had no idea what was to come. Taylor-Lynn was started on bottle feedings right after she came off of the ventilator. At first she did okay, but she slowly stopped nippling. We were so frustrated. The doctors decided to put a g- tube in. We weren't too sure about that idea at first. I was afraid it would hurt her or that it would get pulled out. The doctors assured me that they had done this a hundred times and that she would be okay.

She had her first g-tube surgery on October 1st. It went well, and they planned on discharging her on the 8th. When we went to take her home, she had green and yellow stuff coming up her tube. The doctor decided not to let her come home. They took X rays and found that they had put a hole in her small intestine and that it was her stomach acids that were coming up her tube. They took Taylor-Lynn in for emergency surgery. The surgery took five hours, and they had to remove a two inch section of her small intestine. Once they did that, she was fine with her g-tube.

Taylor-Lynn finally came completely off oxygen on October 12th. She still had problems with nippling and reflux, so they put her on Prilosec and Reglan. The surgeons and NICU doctors decided she could come home on October 24th, one day shy of two full months in the NICU. I was in Walla Walla, Washington with our two other kids and did not have a way to Portland to get her. A wonderful program called Angel Flight flew to Walla Walla to get me and then flew us home from Portland. Taylor- Lynn is now home and happy. She has her big brother, Chance, and big sister, Jasmine, to play with her. We are still having problems with her g-tube-- she got a staph infection around it, and she is still on Reglan and Prilosec. But other than that she is doing wonderfully. We go back to Portland in December to get a button feeding tube put in, and she has to be seen by OT/PT. But for now we are trying to take things one day at a time. It has been a hard road to travel and will continue to be one. But we love our girl and finally have her home where she belongs.


Sincerely,
Taylor-Lynn's mom, Heather Fuhr (Washington)

August 31 - Dear Nicholas Sparks (Guest Blogger Laura Lewis)

Dear Mr. Sparks,

Hi, my name is Laura Lewis and I first wanted to say thank you for the CHERUBS webpage. It has been a great source of information and then a great source of comfort for me. I just wanted to be able to share our story of Sarah's life.

In April 1999, my husband (Howie) and I found out that we were having our fourth baby. What a surprise!! I think I spent the first couple of hours in shock, I wasn't sure if we would ever have another child, our youngest was almost 5 and I was afraid of the age difference (what a foolish thing to be nervous about!!).

We made our first doctor's appointment and got all of my blood work done, which came back great. I was so nervous. Things just didn't feel right, I was sure something was wrong. At seven weeks, I started spotting, my OB took me in right away, did an ultrasound, and said everything looked fine. Other than that scare, I had a great pregnancy, wasn't sick even for a day (my other pregnancies, I had horrible morning sickness). We set up an appointment for my 18th week ultrasound, my husband took the day off and we took the girls out of school so they could see their baby. I remember being nervous having the girls there, but I didn't know why I felt this way. The ultrasound technician was so friendly, chatting away with the girls, then she started scanning and got very quiet. My husband took the girls to the waiting room and I was taken into my doctor's office, where he told me that our baby had a diaphragmatic hernia. I had no idea what that was, I had never even heard of it before. He told me that it was bad, her liver was up and her heart was pushed all the way over to the right side. He wanted to send me into Boston for an amnio and another ultrasound. We went the next morning where they confirmed what my doctor had told us. The doctor in Boston had said that many people at this point would terminate the pregnancy. I couldn't understand what he was telling me. How could I ever just dismiss my daughter that easily?? There would be no way we would give up that easy!! I went home that night, looking for some sort of an answer and found the CHERUBS website and read that Philadelphia and SF did fetal surgery. So I started looking into both sites, not making any decisions yet, I was having another ultrasound in a week with the head ultrasound doctor. When we went back (thank God we saw this doctor), she knew that there was a surgeon who just came back to Boston after being in SF for 10 years. She set up an appointment for us that very day. We went over and met with Rusty Jennings, soon to be Sarah's surgeon. He told us that Sarah only had a 10% chance to survive this horrible disease. He explained the fetal surgery but told us even if she had it, it didn't guarantee that she would make it, but it brought her chances up to 70%. This was our chance that we were looking for!! There was no way I couldn't do it, I desperately wanted to bring my baby home!!! Howie (my husband) and I had to meet with the ethics committee in Children's because we were the first to have fetal surgery. It took a long week to get their okay but they agreed that it was the right thing to do. I was scheduled to have the surgery at 25 weeks. The surgery went exactly, if not easier, than they had planned. They had placed a clip on Sarah's trachea in hopes that her lungs would fill up with fluid and force them to grow. Now came the waiting part. They put me on all kinds of medicine to keep labor away, they were hoping I would hold out at least ten days. I was allowed to go to my mom's (she was closer to the hospital than I was) after the 10 days. I came back twice a week for an ultrasound and non stress test. On my 4th ultrasound (after 2 weeks of being home) they found that my membranes were starting to separate, it was actually floating around and Sarah was sucking on it (whatever happened to thumbs??). They also found I was polyhydramnious and I was having contractions, so I wasn't allowed to go home. I was devastated!! I knew how upset my girls were going to be and I was so afraid of going into labor, I was only 29 weeks! I was readmitted to the hospital on the Labor and Delivery floor, were I had daily ultrasounds and was monitored 24 hours a day. Things went very quietly for the next two weeks. The nurses there were wonderful, they arranged for my daughters to have a sleepover with me on the second week. It was wonderful to be in the same room, watching them sleep again! I missed them so much, I missed taking care of them and being their Mommy. As they were getting ready to go home, my water broke. They brought me down for an ultrasound right away and decided that I still had quite a bit of fluid and could wait till Tuesday to deliver Sarah. I was so afraid. It was 6 weeks since the fetal surgery, but Sarah was only going to be 31 weeks old.

Tuesday came and they got me ready for Sarah. They were going to deliver her by c-section, but at the same time they had to remove her tracheal clips, so we were both put to sleep. When I woke up they told me that Sarah Christina was born. She was 3 lbs. 15 ozs. and 19 inches long. They told me she was doing well. They had intubated her and she was doing good. I couldn't see Sarah until "I could wiggle my toes". After a little while my ob came to see me, something was wrong, she was crying so I thought the worst. She told me that Sarah had to be put on ECMO, what a relief, I thought her news was going to be so much worse! I didn't realize how bad ECMO was. I was taken down to see Sarah and she was so beautiful!!! She had such small delicate features and looked just like her sisters. I was so happy that she was with us, she was such a fighter! They told us the next day they were going to operate on her hernia and asked if we wanted to have her baptized. I felt as though they were trying to prepare us if she didn't make it. We did have her baptized and then they took her away. The operation again went better than they had expected. When we went to see her after the operation, we saw that they had her x-rays up. They were the strangest things I had ever seen, her abdomen was completely empty, every thing was up in her chest cavity. I don't think I realized how bad Sarah's hernia was until then. Everything went well for almost 2 weeks. She even went through a circuit change without any problems. On day her ninth day they told us that she had a blood clot in the cannula in her neck and it needed to be removed the next day. Again they told us that she may not survive because it was so far into her. We took the girls out of school and went 1st thing the next morning just to be there. It came out without a problem. We decided to take a break with the girls for awhile, try to get some time in with them, it had been a long 2 months, so we took them to the aquarium. After we were there for 20 minutes, the hospital called us and told us that Sarah needed to have surgery to close the ductus in her heart, she was having a problem with fetal circulation which was keeping her on the ECMO. I never expected that to happen, I knew she was having a problem, but never realized how bad it was. We rushed back to the hospital and thankfully they hadn't taken her down yet. We all got to kiss her and beg God not to take her from us. We went into the waiting room and within 1/2 an hour the surgeon was back up telling us how great she did. Another triumph!! They were so sure that was going to solve her problems. They wanted to get her off ECMO because every time they had to do a circuit chance, it would take her at least 3 days to get her stats back to where they were. On her 14th day on ECMO, they made the decision to take her off and put her on an oscillator. She was so fluid overloaded and her kidneys were starting to shut down. It was the best thing they could do for her at that point. She came off just fine but couldn't get rid of all the fluid she had stored. Every time they tried to put a needle into her for another IV, she would leak from that spot for days. Her chest tubes were constantly leaking (she had a total of four chest tubes), but I kept saying that at least we were getting the fluid off somehow. Her kidneys all but stopped working so on Monday, they decided to put her on a dialysis machine. We were finally seeing results and she started looking like a little baby again. Sarah was showing signs of having an infection, but they never could find it. It was very frustrating!! On Sarah's 23rd day, Thursday, she kept making her crying face. There was something the matter, but we didn't know what. They kept giving her morphine to help her with pain, but she kept making that face, like it wasn't really helping. We stayed again that night, so confused as to what was going on. The next morning, Dr. Jennings came in and told us that part of Sarah's bowel had died and burst leaving all sorts of bacteria in her. They immediately did surgery and thought they had flushed away most of the bacteria. We were told that we shouldn't go home that night, that the first 24 hours were the touchiest. We stayed and those 24 hours were great. Sarah had even stopped making her crying face. On the 26th hour, her stats dropped, her o2 levels went all the way down to 65, and her blood gases were horrible. It took them 2 hours to bring her back to where she was. I think that was when I realized that it was going to be her last day with us. The next few hours were okay, I just sat there talking to her, kissing her and holding her hand. Then it happened again. I asked God not to take her from us, I couldn't loose her after all that she fought through. I loved her so much!! I knew after they had fought for an hour that they wouldn't be able to bring her back up. I told Sarah that it was okay, that I loved her so much and that God wanted her home. I have never had to do anything as hard as that and pray that I never have to again.They wanted to try the regular vent to see if she tolerated that any better. I was then allowed to hold Sarah, I had never held her before. She felt so wonderful in my arms, I never wanted to put her down. I held Sarah for a long time, I don't know how long, then she left us. I asked that they take her tubes out so I could finally kiss her on her lips. They were the softest lips I ever felt. I held her for another hour before I could leave her. I went to be with my family while they took the rest of her tubes out and wrapped her in a receiving blanket. I came back and held her for a while longer. She was so tiny. Sarah will be gone 5 weeks today and I can still feel her in my arms.I wanted to write this for her, I want everybody to know about her, what a strong fighter she was. So many times they had thought she would not make it through a particular problem and every time she would prove them wrong. She was a wonderful baby and I miss her so incredibly.I miss holding her little hands, brushing her hair, how she would follow us with her eyes and how she would wiggle her toes when we tickled them. I miss being pregnant with her, how she would kick the ultrasound probe because she was so tired of being poked at. I regret that I will never know what color her eyes would have been and what color hair she would have had. It snowed for the first time yesterday and all I could think about was how Sarah would never be able to play in the snow with her sisters. I know the fetal surgery worked, Sarah's left lung was larger than normal and her right lung was only slightly smaller. I thank God that there is some hope for these little babies and pray they can learn more to save even more babies. Thank you for taking time to read Sarah's story.

Sincerely,
Sarah's mom, Laura Lewis (Massachusetts)

May 19 - Dear Nicholas Sparks (Guest Blogger Debbie Blakley)

We found out we were expecting our 6th baby in September 2005. It was a very welcome surprise. The early days were difficult with nausea and tiredness. October when the nucal scan was done and the results looked fine. The sonographer couldn't see the baby's stomach on that scan but said at that stage it wasn't a problem as it was probably just empty, in hind site it was probably already in his chest. We decided not to have amnio as although I was 44 we wouldn't have taken any action anyway whatever the results showed. The pregnancy continued nicely and we were curious to find out if we were expecting a little boy or girl.

Our life changed forever on 23rd December when we went for the routine 21 week scan. At first the sonographer seemed to be struggling to get a good picture. She told us we were expecting another little boy which was great news. After about 20 minutes she told us she couldn't get a good picture of his heart due to his position and asked me to go for a walk to see if the baby would change position. At this stage we were both oblivious to anything being wrong. After 5 minutes we came back and she tried again. The scan was stopped and she said to us that our baby's heart and stomach were in the wrong position. I had read about someone having a congenital diaphragmatic hernia in the paper just 3 days before this and I immediately knew what she was talking about. We were devastated.

We went to see the consultant who told us more about the condition and said that sometimes it can be related to other genetic abnormalities but in our case he did feel it was an isolated defect as nothing else on the scan appeared to indicate any other problems. He said our baby had a 60-70% chance of survival. He did offer us amnio but we declined. He said we would be regularly monitored and arranged a whole series of meetings with the neonatal consultant, pediatric surgeon and many more scan appointments. We were then sent home with a follow up appointment.

On the way home we sent a message to all our friends so they all knew and then had to face our children who were wondering if they were having a brother or sister. It was so hard telling them this news but we wanted to be honest. One of them asked if the baby would die and we said to them it was a possibility but we were going to hope and pray that he would survive. Christmas was very hard. We just went through it like zombies trying to be happy for the children but devastated. I found CHERUBS on the internet and was very well supported throughout by CHERUBS-UK and CHERUBS members all over the world via the CHERUB'S listserv. We decided to name our baby son Joel ( strong willed ) Archie ( brave) Jed (beloved by the lord ) and Abel as Abel means breath and we knew this would be Joel's problem. I set about eating anything that helped lung development including lots of dark organic chocolate that contains lots of nitric oxide.

We attended all the various appointments waiting to hear someone say it would be alright which no one could say. They all said that CDH can be very unpredictable and you cannot predict how the lungs are developing. We had an echo cardiogram which showed Joel's heart was severely squashed over to the right of his chest but appeared normal in its development. Our friends and families all rallied around trying to be positive and many of my work colleagues who are in the medical professional talked to me about their experiences with this cruel defect. The scans indicated Joel was growing well and he grew a healthy head of hair. I gave up work a little earlier than planned and suffered badly with my pelvis. At about 28 weeks I developed polyhydramnios which I knew was a bad prognostic sign. I was offered an amnio reduction which I refused as I was scared it would start labour off and I had been told that the longer Joel stayed in me the better for him. I was also told a good birth weight would help. I did start getting tightenings and at 34 weeks had 2 steroid injections to help mature his lungs if he came early. The decision was made for induction at 38 and half weeks so everyone could be ready for our precious baby's entry into our world.

The induction went very well. My waters were broken and there was lots and lots of amniotic fluid. I wasn't allowed an epidural because of a clotting disorder I have and had decided I didn't want anything like pethidine that could affect his respirations although the doctors said it really wouldn't make a difference as Joel would be intubated straight away. So I decided to do it with just gas and air and Robbie Williams blasting down my walkman!!!!!!For me this was a challenge as I have a very low pain threshold. The syntocinon infusion was started after two hours and about an hour later Joel's heartbeat took a dip from which it didn't recover very quickly. I was put on the bed, told not to drink anything else, all jewelery etc removed in case the doctors decided to do a caesarean. The doctor examined me and put a fetal scalp clip on Joel's head to monitor him more accurately. Joel's heart beat recovered and the doctors decided he was fine and had probably just grabbed his cord!! After this scare my labour continued without anymore drama. I was looked after throughout by my friend Sarah who I trained as a midwife with. She is a wonderful person and was fantastic throughout. Joel finally made his entrance into our world at 20:12 hours weighing 8lbs 8oz and pink with an initial apgar score of 7 @ 1 minute. He was intubated immediately by the neonatal team. Joel was then briefly shown to me before being whisked off to the neonatal intensive care unit. He had one eye open and looked at me. To me he looked frightened and I gently stroked his cheek and told him not to worry it would all be okay. That moment sticks in my mind so vividly now, it was the only time I saw his eyes open.

David and Sarah went around to NICU about 15 minutes later and came back saying Joel was on the oscillator and was ok. By the time I got round there 30 minutes later the consultant said he was now also on nitric oxide and maximum ventilation and if we wanted to get him baptised we needed to do so now. He was very poorly. It was such devastating news. The chaplain came and with David and I at Joel's side along with the nurses Joel Archie Jed Abel was baptised. We were told they were taking it hour by hour and that they were in contact with great Ormond Street Children's Hospital with a view to transferring Joel their to go on ECMO. This is a special heart lung bypass machine that can sometimes help these babies. He had a brain scan which was normal and we were waiting for an echocardiogram too. We were asked to go back to our room as they had a new baby being admitted and parents are asked to leave the unit when this happens. The consultant also felt we needed the rest. She promised to come and get us if Joel's condition changed. We didn't sleep every time we heard footsteps we thought they were coming to us. I held Joel's photo all night. By 06.00hrs we could wait no longer and went round to the neonatal unit. Joel was the same but had suffered a right pneumothorax overnight and had a chest drain inserted. We were told they were going to try Joel on a conventional ventilator instead of the oscillator because he could not be transferred for ECMO on the oscillator. We were also told if he was transferred we would not be able to travel in the ambulance with him and they were very concerned he would die in the ambulance. Joel however could not maintain his oxygen levels on the conventional ventilator and became very blue so he was put back on the oscillator. We called our family and they brought our children Sam, Jessica, Joshua, Jacob and Ben up to see their baby brother it was very, very sad. As our families left they lifted Joel out of the incubator and for the first time I got to hold my precious son. He was so beautiful. He laid on our laps for about 2 hours still attached to the ventilator. We cuddled and kissed him, we told him we loved him so much and we also told him that we understood if he couldn't fight anymore. We wanted him so much to stay with us but we told him that we understood if he couldn't stay. It was the hardest thing we have ever done. Joel's heart was slowing down all the time. Although they were still trying to save him nothing they did was making any difference. Joel's nurse went for a very quick break and left another nurse with us. When she came back Joel suddenly started having ectopic heartbeats and his nurse said this was very significant and removed his ventilator tube so we could hug our beautiful little boy close as he died. At 14.00 hours our precious little boy left us. It was the worst moment of my life. Just 17 hours, 48 minutes after our beautiful baby entered this world he left us again. We sat with Joel in the neonatal unit for a while then we went to a bedroom and waited while all Joel's tubes etc were removed. He was brought to us very quickly and we spent a very special 5½ hours with our son. We were able to bath him, dress him, and take hair cuttings, hand and foot prints and lots and lots of photos. It was very, very special. It was so hard to leave him there. Just 36 hours after we had left home we arrived back empty after having given birth too and lost our beautiful son. The following days passed in a blur. Friends and family took over the cooking and looked after us.

Joel came home to us the night before his funeral. It was lovely having him home here surrounded by his family. We had all put things in his coffin such as photos, letters, little trinkets and a bible. His coffin was tiny, white with coloured balloons over it. Joel's funeral was lovely. Many people came and we had a lovely service at our Methodist Church. David carried Joel in to Tears in Heaven and we both read poems. David read "I'll be there" and I read "In a baby castle". We had music by Keane Bend and Break and you'll be in my heart by Phil Collins. All the words were so relevant. Judith read a Child's angel and Sarah read Gods Loan. We left the church to Robbie Williams Better Man, the same song that was playing when Joel entered this world.

We choose a beautiful cemetery near where we live for Joel to be buried. It is like a big garden and has many beautiful trees and flowers. The birds are always singing there. As he was laid to rest the minister said a very special verse from the bible that had given me lots if hope when I was pregnant.

For I know the plans I have for you declared the Lord. Plans not to harm you but to prosper you, plans for hope and for a future. Jeremiah 29.11

It was very special

We had chosen not to have a post mortem but recently went back to meet the consultant. Joel's blood gases had never been normal and she felt he had lung hypoplasia along with the effects of the CDH. This is a devastating defect

We miss our special little boy so, so much. Our lives will never be the same and this little boy although with us for such a short time had made a huge impact on our lives.

Sincerely,
Joel's mom, Debbie Blakley (Great Britain)

April 15 - Dear Nicholas Sparks (Guest Blogger Michelle Morgan)

Dear Mr. Sparks,

Avery is ½ of a set of Boy/Girl twins born 11/2/97. They were born at 28 weeks. Her CDH was not yet detected. I had gone in 3 days prior for an ultrasound and they couldn't find her stomach. I was supposed to go in the following week for another ultrasound (which is where they would have most likely found the CDH), but the twins had other plans. I went into labor and they couldn't stop it. No one knows why. The only theory anyone can come up with was that Avery knew something was wrong and wanted out -self-aborting. Unfortunately, Connor was on the bottom and had to go first. He was head down and she was delivered breech.

After routine x-rays right after they were born, it was found that Connor had a mal-rotated intestine and Avery had, either, a Diaphragmatic Hernia or Diaphragmatic Eventration.

Avery was on a regular ventilator for a few days then she got a pneumothorax and was put on an oscillating ventilator for 3 ½ weeks. During this time, through ultrasounds, they didn't see a hole in her diaphragm so they deduced that it was Eventration. They had to use steroids to get her off of the vent.

Meanwhile, Connor had his operation to fix his mal-rotation at a different hospital and did I mention that we had a 15-month-old boy at home through all of this? Anyway, we kept asking when they were going to operate on Avery. They kept putting it off. First she had to gain enough weight, then they weren't sure if they were going to at all. They thought the eventration may fix itself as she gets bigger. In the meantime, she is struggling for every breath. Finally, 2 1/2 months later, 1/2/98 they operated on her. That's when they found the hernia. They put a g-tube in at the same time. We only used it for about a month. She would projectile vomit with every feed whether we used the tube or not so we didn't, since I was still trying to breastfeed - which she never did and after 8 months of trying I finally gave up. She did the projectile thing for over a year. She had ROP that self resolved but she also had strabismus. She had surgery to have that repaired in both eyes on 12/29/98 and never threw up again.


Written by Avery's mom, Michelle Morgan (Missouri)

April 13 - Dear Nicholas Sparks (Guest Blogger Elaine Moats)

Dear Mr. Sparks,

I cannot believe 14 years have past by since our family 1st learned about CDH. Like they say "How time flies when you are having FUN!!" I am thankful for each day we have had with our Kristin after the rocky start she had. I won’t go into a lot of detail about our CDH journey because it is like so many of yours but I will share alittle. We live in a rural community in SE Montana with the population of 8500 people. My pregnancy was pretty uneventful. I had 3 ultrasounds in the first trimester because the doctor had trouble finding a heart beat. After that things went smoothly until my 8th month when my blood pressure would not stay under control. So at 37 weeks gestation the doctor induced labor. Like everyone we were anxious to hold our new baby, count toes, fingers and give kisses. Baby Kristin started having distress in the birth canal, they had no time for a C-Section so it was "Hang on Elaine" and life has not been the same since! The nurses were cleaning Kristin up and the doctor was sewing me up when he said "Do you need any help?" and the nurses said (as they ran out the door) "We’re going to the nursery, what is her name?" Next thing I knew I was alone wondering what was wrong. Kristin was born at 4:10 pm, the transport team from Denver, Colorado was here by 7 pm and by 10 pm we were on the jet to Denver. We would have been gone sooner but the team had trouble stabilizing Kristin. Kristin had no diaphragm at all on her left side and was fully paralyzed with drugs and incubated at 6 minutes of age. She was born with CDH, pulmonary hypoplasia, severe pulmonary hypertension and atrial septal defect. Our hometown doctor and nurses had never seen a baby like this so needless to say no one thought Kristin would live for very long. The nurses told my parents to say goodbye to her for the last time and my doctor released me to go with the team to Denver. Kristin had her surgery to fix her diaphragm at 9am the next morning. They performed it in the NICU because she was too ill to be moved to surgery. At that time Children’s Hospital of Denver was in the process of doing research on the effects of nitric oxide on different breathing problems. They had used it on 9 other children; Kristin was the first CDH child to have this treatment. It took the place of ECMO and worked great for Kristin so in this she was a pioneer. Nitric Oxide has been FDA approved since then. For 2 weeks the doctors kept telling us to be prepared for Kristin not to make it. But she proved them wrong and I got to finally hold my precious daughter at 2 ½ weeks old. What a wonderful day!! After a month at Children’s Hospital we were flown home to our local hospital. In the next 3 months we were in the hospital more than home. We could not keep Kristin’s right lung clear and her oxygen needs were increasing. Back on the plane to Denver we went. What a relief for me that was, to be going back to a hospital where they have dealt with other children that have CDH. Don’t get me wrong we had good care from the doctors at home but they knew when they had reached their limit, as far a Kristin was concerned. Children’s Hospital found out Kristin had been refluxing and that had caused all the infections in her lung. Back to surgery she went. She had a Thal Fundoplication and a G-tube was placed in her stomach. It didn’t take long for her lung to clear and for Kristin to stop nippling her bottle and become G-tube dependent. At 1 year of age Kristin had her ASD of her heart closed in hopes that she would come off oxygen. No such luck! That took another 13 months. See Kristin has never gone by the book on anything and still doesn’t! HA! For the first 3 years we pretty much kept Kristin secluded from people to try and give her lung a chance to develop without catching a cold or some other "bug". Our family called her the "bubble baby." Then once we were brave enough to take her out she was quite the "Velcro baby" pretty attached to mom and dad. To this day she is still afraid of most men (must be from all the doctors) but I know that won’t last till she is 30 years old like I would like! HA! It took until she was 4 ½ years old to get rid of the G-tube feeds. This battle is common with a lot of the Cherubs and since I love my food that was one of the most puzzling battles we faced with Kristin. One doctor wanted me to starve her into making her eat but I just could not do that. She is still not the greatest eater and is under weight for her age but she had been holding her own. Kristin’s reign as head of our household ended in 1996 when her sister Brittany was born. Brittany was a surprise from start to finish. Let’s just say both my girls like to make a GRAND entrance into this world. Brittany did not have CDH but was 2 months premature and had a leftsided lower ingernal hernia, which was repaired at 2 months of age. Kristin’s left lung never did grow much to be a lot of help in her breathing but that doesn’t stop her much. She would love to play sports but found out this summer at a girls basketball camp that she just can't keep up with them (and that was playing half court). So this fall she tried girls volleyball and LOVED it. She is also cheerleading for girls and boys basketball this winter so that will keep her happy. As far as colds and such go she sure handles them well. Her colds seem to stay in her sinuses, which is okay with us. Like I said at the beginning of this can’t believe we have come this far but we finally feel like a ‘normal’ family (whatever normal may mean!). My heart smiles when people learn about Kristin's medical history and they say, "Boy to look at her you would never guess she has been through so much." It has been a long journey but a rewarding one in the people we have met. Having a child with a disability sure puts your life into the proper perspective and we thank God each day for our little miracle Kristin Marie. Sometimes we felt we were the only ones going through this journey but since Cherubs has been started that has been a thought of the past. Before Kristin was born we had never heard of CDH. We have learned a lot since then. Before the Internet the only place to gather CDH information was the library. We spent many hours in the Children’s Hospital library reading about CDH. We came away thinking Kristin would only live to the age of 10 or 12. But as we found out in 1992 the medical technology to save CDH children was only that old. Research needs to continue and there needs to be more information about CDH out there. With Cherubs help we will get it out there so no parent has to wonder what is CDH or be alone in their CDH journey.


Written by Kristin's mom, Elaine Moats (Montana)

April 4 - Dear Nicholas Sparks

Dear Mr. Sparks,

Michigan proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hawkins family!

 

 

 

Today is the 4th day of CDH Awareness Month!

 

Sincerely,

Dawn Torrence Williamson

CHERUBS President

Sincerely,

Dawn Torrence Williamson

CHERUBS President

April 3 - Dear Nicholas Sparks (Guest Blogger Felecia Woodruff)

Dear Mr. Sparks,

Today is the 3rd day of Congenital Diaphragmatic Hernia Awareness Month.

And today, our CDH families are in an uproar.   A "news reporter" wrote an Op Ed piece about Congress and included our Senate Resolution.  While that wouldn't have been bad, the article itself made light of CDH and offended many of our families.  Below is an open letter that was written by Felecia Woodruff, CHERUBS Awareness Committee Leader to the author of the article, James Warren, of New York Daily news:

Dear Mr. Warren,

Families affected by Congenital Diaphragmatic Hernia have been fighting for public Congenital Diaphragmatic Hernia Awareness for many years now. On March 25th, 2015, Senator Jefferson “Jeff” Sessions from Alabama, introduced the bill and congress approved the resolution S.Res. 115: A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month” for the 4th consecutive year.

  Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
 

   Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

   Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

   CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

A volunteer at CHERUBS- The Association Congenital Diaphragmatic Hernia Research, Awareness and Support read an article posted by James Warren at New York Daily News on March 29th, 2015 and was in total shock and disbelief that someone would poke fun of such a horrible birth defect leaving affected CDH families in tears.

The article starts off stating...

And closes with...

Comments to the article are even worse. One comment states...

"As I live and breathe! Thank you, GOP controlled Congress, for making April Hernia Awareness Month!" "Let the month of May become Clown Appreciation Month, so giant red shoes will fly off the shelves across the land and we as a nation can bow our heads in solemn prayer and gratitude to the biggest Bozo, Mr. Speaker, John "Bozo" Boehner.".

Thanks James Warren and New York Daily News for making Congenital Diaphragmatic Hernia Awareness Month a mockery. Our families deserve way better than this. These babies need to be heard. Click here to read the full article. To learn more about Congenital Diaphragmatic Hernia visit www.cdhawarenessday.org.

To contact James Warren:
Twitter
Email

To contact New York Daily News:
Facebook
Twitter
Email

Sincerely,
Felecia Woodruff
CHERUBS CDH Awareness Committee Leader
awareness@cherubs-cdh.org 

April 2 - Dear Nicholas Sparks

Dear Mr. Sparks,

On Day 2 of Congenital Diaphragmatic Hernia Awareness Month, we have a lot of proclamations and news to share!

New York Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This resolution was requested on behalf of the Esposito family! 

West Virginia Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hensley family!

Sandy, Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

 

This proclamation was requested on behalf of the Hensley family!

West Jordan, Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hensley family!

Provo, Utah Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Hensley family!

Mebane, North Carolina Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

 

This proclamation was requested on behalf of the Lopez family!

Vero Beach, Florida Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Olivia Faith Foundation, Inc.!

Orlando, Florida Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Juarez family!

 McGehee, Arkansas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

Wake Forest, North Carolina Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

This proclamation was requested on behalf of the Williamson family!

Greenville, Texas Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! 

 

 We are so very, very proud of all the families who are helping to raise CDH awareness by writing to their governors and mayors, holding events and fundraisers in April!

Sincerely,

Dawn. M. Torrence Williamson

CHERUBS president