December 24 - Dear Nicholas Sparks (Guest Blogger Alan Knapton)

Dear Mr. Sparks,

Our daughter Clara was diagnosed by ultrasound at week 16 during a routine amnio. It was suspected even before that. She was born full term during January of 95. Her left sided hernia was repaired at about 6 hours of age. Even though much of her intestines were up in her chest, the hole was rather small and easily closed without a patch. Six hours later she was on ECMO.

Her "progress notes" (or lack of progress) from the NICU tell us of nursery stay. Along with her CDH, she had Hypertension, Pulmonary Edema, Cardiac Stun (Decreased Heart Contractions), Urinary Track Infection, Hemoperitoneum (massive abdominal bleed), PPH, Occiput hemutoma, Bronchopulmonary Dysplasia, and suspected GE Reflux. She also went through Morphine withdrawal after being on it for 30 days. To everyone's surprise, she came off of ECMO on her second attempt, 24 days after birth. Termination of her treatment was "suggested" at day 20, following her failed idle. Her vent settings were better than expected, and she came off the conventional vent after 7 days. She spent one day on the jet vent before she pulled the tubes out. About another month of oxygen. She came home on her second month birthday with standby oxygen.

We had a night nurse for the first month at home (her third month of life) who fed her with a NG tube. During the day she took the breast. Her night feeding formula was a concentrated Similac fortified with Polycose to boost the calories. We used breast milk whenever possible, also fortified with Polycose. She had Cisapride to prevent reflux, and also Aldactaside (sp?) was given twice a day in her vaporizer(I forgot the name of that device!) She had a "speech therapist" come in to work on her suck/swallow reflex that finally developed at about 4-6 months. She also had someone from Infants/Toddlers program come in to work on her motor reflexes. She was behind till about 6-9 months, but by 11 months she was walking.

We tried to give her as much breast milk to boost her immunity, and she had only 3-4 mild colds her first year. Her second year was just as good. We did keep her at home and avoided as much possible exposure to germs as we could during these first few years, but now she is going twice a week to day care. She sings, dances, speaks English and Spanish, and is a very happy, loving child.

We are very lucky, and we thank God every day for Clara. The doctors and the technology allowed her to live, but God gave her life.


Written by Clara's dad, Alan Knapton (Maryland)

December 22 - Dear Nicholas Sparks (Guest Blogger - Joanne Kjaersgaard)

Dear Mr. Sparks,

Ariana was born on the 8th of May, 1990. She is our third child & was dubbed the wild child when she was 2, she has also been referred to as action girl! This is a quick summery of her life to date.

Detected at 17.5 weeks via an ultrasound, 13 ultrasounds & 1 amnio between 20-34 weeks, 6 days overdue, born naturally with an audience of 13 Dr’s & nurses. I think we had a lot of tests as not too many babes had been detected through pregnancy & I believe they got their worth with us! We were kept up-to-date & never felt ‘left out’ of the goings on.

When she was 2.5hrs old, she was stable enough to start surgery. It took 2.5hrs. Her stomach, all of her large & small intestines, 1/3 of her liver & her spleen had managed to move through the hole in her left diaphragm. Her bowel was mal-rotated. She had 1/3rd of the top lobe of her left lung. 4 weeks later we where home. She threw up constantly, badly. At 11mths she had 2nd surgery, a Fundoplication. She had no valve at the top of her stomach, so they created one for her. She has not received her nickname without cause. At 2, she unlocked the front security screen door & went wandering off down the street. At 3, she climbed a 6ft pool fence (no foot holds), at 3.5, she managed to get onto the roof of the house. She scaled our 6 ft fences to visit the neighbours! She drew on walls, tables & chairs. She never sat still for a meal & still doesn’t today. Her mind seems to work at double the pace of the rest of us, so does her body! She has managed to a great deal more, good & bad, but I’m only allowed one page!

In her first year of school, I was called up to the Deputy’s office 4 times. This year, she’s in her 5th year & I’ve only been up there once ..... so far. She took up Karate last year, but we had to ban her from that because she was starting to beat up on her sisters every time they annoyed her. By rights, she should have had a few broken bones with the tumbles she has taken but she hasn’t?

She is a generous person, always willing to share. She is the one that accepts the dare, always the first to ‘give it a go’. She gives everything she does 110%, be it good or bad, behavior or habit. There is a peaceful quiet that settles on the house when she is not here, that becomes a gaping hole if she is gone for more than a day. There is no doubt that she is the spice in our house, & we have 4 kids! She drives me crazy, she stirs up her sisters & brother. She is life at the fullest & we wouldn’t have her any other way. She is our wild child, our action girl & we love her.

There is no doubt in my mind that this girl will succeed in everything she does, lets hope WE can survive what she has in store for us.



Written by Ariana’s mom Joanne Kjaersgaard (Australia)

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 14 - Dear Nicholas Sparks (Guest Blogger Melanie and Brian Kelsay)

Dear Mr. Sparks,

Madison was born 12-28-01 at a healthy 7lbs, 9 oz. She was a very fussy baby and the doctor said it was just what some babies do. She never liked to bed held against you she would just cry. When she was about 2½ months old, we started the day off as usual. Later that day we had to go out so I put her in her car seat and everything seemed fine. Then out of the blue she started crying. She wouldn't stop, so we went home. I thought maybe she had gas because her tummy felt like it was tightening up a lot. I gave her some gas drops and that didn't seem to work. I then gave her some water thinking maybe it was constipation. When my husband came home about a hour later, she had gotten to the point where she wasn't really crying any more. She was more like gasping for air, so we rushed her to the Emergency Room in the next town over. At first, the nurse was pretty rude telling me she was dehydrated and was trying to give her water (which she was spitting back up) about 5 minutes or so later. They thought she looked a Little blue around the mouth and me and my husband thought she looked a little pale. They put something on her toe and decided from there they would give her oxygen. They then took her to have an x-ray. At this point, we didn't know what was going on. They came out and went straight to the phone to call a doctor to come in right away. The nurse during all this was asking my husband how I treated my daughter and if I seemed to be stressed with her (trying to insinuate that I did something to injure her). When the doctor came, he told us her left lung was collapsed and they needed to put in a chest tube. They didn't think she'd make it with out it. Then they where going to fly her to Wichita, a bigger city. When they put in the chest tube, it wouldn’t re-inflate her lung like they said it should. I flew with her and my husband had to drive 2½ hours away by car. The doctor looked at her and her x-rays when we got there and said she had a cyst on her lung and it had burst and they would have to take out part of her lung. It was so stressful on her and us. She had to wait till the next afternoon to go to surgery. In the meantime, they used a big needle and removed a lot of fluid they thought was from her lung. When they were finished with the surgery, the doctor came out and said that she actually had a diaphragmatic hernia and that they put her stomach and spleen back through the hole. They also said when they did that, her lung re-inflated back to normal – the fluid they removed was actually formula from her stomach. The doctor said that she was lucky, her spleen was acting as a plug allowing her lungs to develop normally. She was in the hospital for 5 days and then went home. It was hard for a few weeks. My mother came from out of state to help me with her. She didn't want to be held at all – she stayed in her swing most of the time. She got better each day and today is a happy healthy almost 12 month old. She's always smiling. We have a picture of the doctor holding Madison on her bedroom door so every time we go in there, we know how thankful we need to be that he saved our baby.

Written by Madison's parents, Melanie and Brian Kelsay (Kansas)

December 13 - Dear Nicholas Sparks (Guest Blogger Myra Verdin)

Dear Mr. Sparks,

Quinn Michael was born on July 14, 1995. He was about 10 weeks too early, and was born with a Diaphragmatic Hernia. The doctors did not know that my Quinn was sick until he was born.

My water broke at about 4am the morning of the 14th. Scott and I rushed to West Jefferson Hospital. They did an Ultra Sound and saw he was breach. So at 6am I had him by C. Section. After I was in the recovery room a nurse came in to the room and told Scott and I that "Your baby has a deformation". Then she took Scott to see Quinn. Later at 5pm they gave up trying to save his life and wheeled me into hold him. I am not sure how long I held him but it was not long enough. He passed away at 3am July 15th. We had a memorial service for him about 2 days later. I never knew we had so much family and friends.

Mommy loves you Quinn I am so blessed that I had you in my life no matter how brief your stay. I am glad that I got to hold you when you were still alive but I regret not holding you after you passed away. You are always and forever with me.


Written by Quinn’s mom, Myra Verdin (Louisiana)

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)

November 13 - Dear Nicholas Sparks (Guest Blogger Kim Schultz)

Dear Mr. Sparks,

Our lives changed forever on September 21, 2000, when I took a pregnancy test and it was positive. We were so excited to finally start our own family. Everything progressed normally during the early stages of the pregnancy. I was exhausted and experienced morning sickness. On December 5, 2000, I went to the doctors and took my AFP test. Ten days later the doctor's office called to say the results of the test were abnormal. They said not to worry, that 10 out of every 100 tests came out abnormal and only one of those 10 had a problem. I went back to the doctor on December 28 for an ultrasound. We had our ultrasound, and the due date was three weeks off of what I originally had. He decided to send us to another hospital in our area to have a level II ultrasound done.

On January 5 (19 weeks pregnant), we had the level II ultrasound. We decided not to find out the sex of the baby. The ultrasound lasted about 45 minutes and then the technician left the room to review the results with the doctor. About ten minutes later they returned, and the doctor introduced himself. As of that moment, our lives took a turn that will impact us forever. He immediately told us they found a problem with the baby. The baby had a congenital diaphragmatic hernia. He explained what it meant and explained that there were hospitals that offered in utero surgery as an option and that we needed to have an amnio done to rule out any chromosomal abnormalities. We agreed to do the amnio. They then took us back in to meet with the genetic counselor. This is when we learned they felt the baby had Trisomy 18. The baby had what looked like a heart defect, was behind in growth, clubbed feet, clinched fists and a two-vessel umbilical cord. We were devastated. She told us that the chances of carrying to term were not very good, and we would probably lose the baby.

Ten days after the amnio was done, we got the results. They were normal. We were ecstatic. It gave us renewed hope. We went back for another ultrasound on January 22. We found out we were having a little girl. We decided that with the serious defect we were facing, we needed an identity for our baby. We talked about the in utero surgery option, and on February 12 (25 weeks pregnant), we ended up at the Children's Hospital in Philadelphia. After a day of tests, it was finally time to meet with the team of doctors. They sat us down and told us that after reviewing all the tests, they felt our daughter's condition was fatal. She had the diaphragmatic hernia that was severe (her lung to head ratio was 0., along with all the other defects they found in the first ultrasound. We went home crushed.

Over the course of the following months, we saw many specialists, and we received the same opinion every time. There was nothing that could be done. She would not survive long enough to go home with us. We continued on with the pregnancy, prayed, and felt is was our duty as her parents to give her the best chance possible. On May 23, 2001, we went to the hospital for our induction. Due to the team of doctors we had met and arranged to be with us at delivery and the fact that the hospital was one hour away, we felt this was the best. We were 39 weeks, 1 day pregnant. I was actually in labor when we arrived and did not even know it. They started the IV and the induction drugs. It was around 8 p.m. The next morning the doctor came in and broke my water and started my epidural. Things were progressing very slowly.

Then the baby's heartbeat started to drop with the contractions. They stopped the pitocin, and her heartbeat did get better, but my contractions were not regular. The doctor came in and told us he felt she might not survive labor. He felt the only way we would be able to hold our daughter alive was if we had a c-section. We agreed. The c-section was going to be performed in the NICU where the team of doctors was waiting. At 2:42 p.m. on May 24, 2001, Madison Lillian entered the world. She was alive. She was immediately taken and put on a ventilator. I told Shane to go and be with Madison. They did an echocardiogram of her chest and took blood gases. When the results came back, it was just as we had been told. Her defects were too severe. She did not have enough lung tissue to breathe on her own. We decided to take her off the vent and spend as much time with her as we could.

Two hours after she was born and 30 minutes after we got to hold her for the first time, Madison left this life in her Daddy's arms. In that short time, we were able to have her baptized. We kept Madison for another 6½ hours that night. Our family and friends were able to see and hold her. One of the hardest things Shane and I have ever had to do was to leave the hospital a day and a half later by ourselves. Six days later, on our due date, May 30, we buried our daughter. Madison changed our lives forever and has taught us more about life than anyone ever could. Even if we had known from the beginning the outcome, we would do it all over again. Madison was worth it all. She spent a moment in our arms; she'll spend forever in our hearts.

Sincerely,
Madison's mom, Kim Schultz (Ohio)

May 31 - Dear Nicholas Sparks (Guest Blogger Gabriel Chicoine)

Dear Mr. Sparks,

At the 30th week of pregnancy, we found out our little daughter had an important deficiency in her thorax called Congenital Diaphragmatic Hernia (CDH) – (1 in 2500). The doctor’s prognosis gave us only a 20% chance that our daughter would survive. Even after that news we decided to follow through with the uphill battle and having to be at the hospital on a daily basis for meticulous follow ups on our baby’s development.

The bad news just kept coming, and we found out that Elizia was also having problems with her heart. The last two months of pregnancy where plagued with unbelievable ups and downs and the burden of the unknown. However, we were very well informed as to the nature of the problem and what type of treatment Elizia would need at birth. The most important thing we needed to understand was that the hole in her diaphragm was causing her vital organs (stomach, intestines, liver) to push against her rib cage and was preventing the normal development of the lungs. However, it was impossible to determine, until Elizia would be breathing on her own, what type of pulmonary tissue was in place to allow a real chance of survival.

On December 14 we were admitted to the hospital to induce labour. At 3 p.m. my extra-super, beautiful little girl was born, and her vital statistics were quite good considering her condition. Her chances of survival were then upgraded to 50%. The first treatments went so well that when they were ready to transfer her to CHEO, they gave us a 70% chance that Elizia would survive.

CHEO (Children’s Hospital of Eastern Ontario) - During the transfer from the General hospital to CHEO many complications where beginning to arise. Elizia’s pulmonary pressure began to rise and her prognosis was reverted back to the same as before the delivery. The goal in the first 8 to 10 days was to stabilize her pulmonary pressure while keeping a good blood pressure. Since only one lung was present in the echogram, we had to hope that it would be enough to allow future development after the operation. Many medications were administered to her through intravenous to help her get through the critical first few days. She needed to be hooked up to a special ventilator to help her breathe and supply enough air to maintain her vital statistics. One of the essential medications used to prevent her from fighting the ventilator was Pavulon. It would paralyze her and prevent her from suffering too much because she couldn’t breathe normally.

YOYO (ups and downs) - During her 9 days of life, Elizia was a living yoyo as many different levels were attained. The first was at her birth when she showed signs of improvement. Then the first down was when she was transferred to CHEO and was put on a special ventilator. On the second and third day her vitals improved greatly, but on the fourth and fifth things turned worse again. So much so that when an echogram was done on the Monday after her birth (the fifth day), the neonatologist noticed a deterioration of the pulmonary mass which diminished all hope. It was at that time that we realized our daughter would not win this fight. We were then told that if there were no improvements by Friday we would need to make a decision. After the terrible news, we needed to gently prepare our daughter for her journey towards the light. While we were preparing, our little Elizia had a week of great improvement to which point the doctors told us she would make it to the surgery. The surgery consisted of lowering all the organs stored in the thorax and repairing the hole in the diaphragm. The Thursday before the fateful day was the best Elizia had, we could definitely see some major progress.

The last day and the last moments - Around midnight, the doctors on hand were trying a maneuver in the hopes of lowering the O2 levels for the operation. This maneuver turned out to be Elizia’s final rites since her reaction to it considerably increased the pressure of her lungs. The doctors announced to us that that night would be critical and to be prepared for anything. Around 4 a.m. they informed us that Elizia had continued a downward spiral and they were trying to stabilize her but that it wasn’t working. All we could notice was the dwindling numbers of 02 and NO2. I will always remember the multiple critical moments and the decision that we had to inevitably make. The main neonatologist was called and upon arrival I cracked. I understood the end had come.



Many minutes later it was time to finally disconnect our little girl and to let her rest in peace. We were informed that when she was disconnected that she would only live a few minutes. And that is exactly what happened. We had just enough time for a final prayer and to sing her a song to accompany her through the passage of her soul. The four hours that followed were precious hours were Mommy held her daughter with love. The first steps of her grieving process.

Today the mourning continues its path, and I am filled with gratitude towards this Angel that was sent from heaven to help me grow and give me strength to realize my new potential. I will never regret anything. Having our Angel for 9 precious days has made me the happiest man in the world.

Everyone who was asked to assist in the final moments was called: family, friends and missionaries. The Elders had graciously blessed us and Elizia the day before not knowing that that she was in her final moments. The time had come to make sure the day would pass in peace, harmony and serenity to accompany our little Angel towards the light. We were told that Elizia would be brought into a private room where we could spend our last moments with her. She was placed on a special respirator that was used to keep her alive. The intensity was at its maximum in this room where Elizia would spend her last moments. Everyone was saying their goodbyes, and I was feeling great enlightenment mixed with great sadness. I felt I had the chance to help this little soul find enlightenment but at the same time my daughter was leaving me. I will never forget those magical moments.

Sincerely,
Elizia's dad, Gabriel Chicoine (Canada)

May 15 - Dear Nicholas Sparks (Guest Blogger Latoya Berrios)

Dear Mr. Sparks,

My husband and I were really excited to learn if at our eighteen week check if we were having our second boy or girl. We were pleased to find out that we were having a baby girl. The very next day our world changed. My OB/GYN wasn't his normal happy self and my heart dropped when he said something was wrong. He tried to explain what CDH was but we were frozen. The next following months were a series of learning as much as I could about the birth defect, an ultrasound twice or more a month, and an emotional rollercoaster.

I could tell by all the ultrasound pictures that not only were she already beautiful but she looked like her sister and father. I decided on naming her Jaila for no reason other than the fact that her siblings names started with J. I just wanted her to fit in with others.

A week before her scheduled birth, I felt like I was crazy from anxiety. I was feeling all that one person could feel at one time. I was happy and at the same time I was depressed. The day before the delivery, I ate at Ruby Tuesday and tried to stay calm because I didn't want the baby to stress out. My husband seemed nervous but okay at the same time. I know deep down he was feeling the same as I. I just hope that he was ready for the next day.



Five days later we had a memorial and she was even more beautiful in her death. I love so much and everyday is a struggle without my baby Jaila. The only thing that soothes the pain is knowing that one day I’ll see her again and God is perfect and makes no mistakes. Knowing Jaila in my tummy for nine months and the nine hours she was on earth I completely understand why God needed something so beautiful to take to heaven. He could brag about the flower he got from me. Clearly only heaven could handle something as beautiful as my cherub in heaven, Jaila Berrios.

The day of delivery was very exciting as if Santa was near and I was a four year old. I was calm considering what I knew was about to happen. I was rolled on the operating table about 12:45pm. Jaila was delivered at 1:18pm and immediately there were problems and everyone knew it. She couldn't cry, scream, or breathe. As she came out she looked at her father as if she was requesting his help and later he told me how helpless at that moment he had felt. About two hours later the nurse called me while I was in recovery for permission to place her on ECMO. I said yes but that cause more problems. Eventually her doctor called my husband and said he had done everything he could do and he didn't think she would make it through the night. My husband I made the decision that we didn't want her to suffer any longer and we pulled the plugs and held her until she died in our arms. Jaila wouldn't have survived for as long as she did if it wasn't for technology. She was pronounced dead at 10: 24pm and then came more cries from the parents. We continued to hold her until it got to hard so we gave her to the nurse.

Sincerely,
Jaila's mom, Latoya Berrios 

April 18 - Dear Nicholas Sparks (Guest Blogger Natalie Mulak-MacPhee)

Dear Mr. Sparks,

We became pregnant with our first child in October 1999. The pregnancy went along normally until Feb. 24, 2000, when during our routine prenatal ultrasound at 19 weeks, our baby was surprisingly diagnosed with a congenital diaphragmatic hernia. The doctors at the IWK Health Center in Halifax, N.S told us that there was a 50/50 chance of survival. An amniocentesis was performed to rule out any chromosomal abnormalities, and our results were normal. From that point on we had regular ultrasounds usually every 2-3 weeks. The doctors were concerned that because the heart was moved to the right side of the chest, there was the possibility that the major vessels to the heart would become too distended and a blockage would occur causing the baby's heart to fail. Fortunately, this did not occur. By all accounts, our baby was developing at a normal rate, and at 28 weeks I was given two steroid injections to help the baby's lungs develop.

On June 6, 2000, during a routine prenatal visit, my doctor discovered that my blood pressure was elevated. I was hospitalized overnight and then placed on bed rest at home. To our surprise, I went into premature labor on the morning of June 10, 2000. Owen was born vaginally at 4:41 p.m., six weeks early and had an initial Apgar score of 2. Owen weighed 6 pounds 2 ounces and was 19 inches long. He was immediately placed on an oscillating ventilator and kept "paralyzed" until a few days after the surgery. The doctors explained that the repair would take place when Owen was more stable, preferably moved to a conventional ventilator and off nitric oxide. Owen remained unstable and on the oscillating ventilator for several days. Finally his doctors decided to go ahead with the repair while still on the oscillating ventilator and nitric oxide. The conditions were not ideal, but they felt this was his best chance. Owen did very well during the surgery on June 16, 2000. The defect was a lot larger than expected, with his stomach, spleen, bowel, and his intestines herniated into his left chest cavity. A Gore-Tex patch was placed to repair the opening and replace the missing left side of his diaphragm. Owen remained very stable during the 3-hour surgery and actually came out of the surgery on less oxygen than he went in on. Two days later he was taken off the nitric oxide and moved to a conventional ventilator. He was extubated on July 4, 2000, and was started on small bottle feeds of breast milk the next day. Once his feedings increased substantially, he was allowed to try breastfeeding. Owen fed well, gained weight and was released from the special care nursery on July 17, 2000. We brought Owen home two days before his due date!

The next few months were uneventful until Dec. 24, 2000, when Owen developed a high fever and was very listless. All he had was a virus, but because of his past history, a chest x-ray was taken and a loop of bowel was seen in his left chest cavity. His "patch" had begun to separate from the chest wall, allowing a part of the bowel to reherniate. Luckily for Owen, this was discovered before he began to show any symptoms of a strangulated bowel that would have required emergency surgery. A second repair was performed on Dec. 28, 2000, and the surgery took almost six and half hours. Owen's smaller left lung did not tolerate the surgery well, and he came out of surgery in critical condition and back on a ventilator. Owen made another speedy recovery, was off the ventilator in 36 hrs, and came back home on Jan. 3, 2001.

Since his second surgery, Owen has been hospitalized several times for respiratory illnesses, and he has used both ventolin and pulmacort on and off. Otherwise by all accounts, Owen seems to be developing normally. He is a very happy little boy, and we feel blessed and very lucky to have him! Hopefully the worst is behind him, and he will grow up without any memories of his early struggles, with only a few "cool" scars to remind him of how special he is!!


Written by Owen's mom, Natalie Mulak-MacPhee (Canada)

April 12 - Dear Nicholas Sparks (Guest Blogger Denise Meyers)

Dear Mr. Sparks,

Ashley entered the world 2 weeks early on a gloomy Friday morning. Looking back I feel the rain was the angels weeping for the suffering my child would have to go through. We had no previous indications that there were any problems. An ultrasound at 27 weeks told us we would be having our third daughter. My labor was a little different than with my first two as the contractions were very erratic. They never seemed to developed a pattern you could count on. It was a normal delivery right up until Ashley took her first breath. We heard a small whimper and then she passed out. The nurses and doctors rushed to her side and the pediatrician was quickly called. Within an hour we were informed of the diagnosis. Congenital Diaphragmatic Hernia. They gave her a 40% chance to make it to Omaha, the nearest children’s hospital with an ECMO machine. Because of the weather they were unable to life flight her but instead took the 84 mile trip by ambulance. We had her baptized before she left, kissed her and cried. It was terrible to be left behind. You feel so utterly helpless. They called me when she arrived and because my husband hadn’t arrived yet I have to give my consent to put her on ECMO. Three hours later I contacted the NICU and found out she had remained stable enough that they did not put her on ECMO but only the high frequency ventilator.

Morning arrived with a phone call. She had remained stable throughout the night and they were going to do surgery to correct the hernia within the hour. I called my mom and got the doctor to release me from the hospital. We headed for Omaha knowing we would not be able to see her until after the surgery. Ashley’s surgery went well. And from then on it was a long hard road for her. It seemed for every few steps forward she took a few back. At 1 month and 9 days she was transferred back to Columbus. They felt she was progressing well but just needed a little work on her feedings. As soon as she started to gain weight regularly we could take her home. Coming to the Columbus hospital was a nightmare. They were no where near as modern as the Omaha hospital. We had difficulty in getting in to see our daughter and after 3 attempts I finally had to phone the doctor while he was doing rounds at the hospital to have him inform the nurses that Ashley’s sisters were to be permitted to see and hold her whenever we desired. The nurses were not as familiar with the equipment and they were not as adept at the NG feedings. Ashley began throwing up every feeding. Dr. Fry started running tests and discovered that Ashley had developed a bowel obstruction. The cause was scarring from the original surgery. We ended up taking her back to Omaha for more surgery on June 17th. We decided that when she left the Omaha hospital the next time it would for home. No NG tube, no oxygen, no nurses, nothing. Just our dear sweet baby girl. Feedings were difficult. It was so tiring for her to suckle the bottle. We were told to only let her eat for 20 minutes. After that she was burning off more calories that she was taking in. We had to try several formulas because of her spitting up (she had reflux). We finally ended up on Alimentum with Polycose for additional calories. The first two years were very difficult. Ashley developed RSV and pneumonia twice each. Every ear infection caused wheezing and we would end up on breathing treatments and often chest P.T.. Antibiotics didn’t seems to work as well on her infections as they had on her sisters. Each time she got an ear infection we had to get out the big gun antibiotics to stop them. But she did out grow the reflux. It really seemed to lessen once she started on solid foods. We were beginning to forget about the early year struggles by the time Ashley was four. She was looking forward to preschool. Her weight and motor skills were right up with kids her age. Her lung capacity test showed it to be in the normal range. But just when you think you’re out of the woods something snaps you back to reality. Ashley began to complain one morning of a stomachache. She was very persistent about it and would not eat or drink anything. When I went to lift her on my lap I felt a lump in her stomach. I called the doctors and got her in that afternoon. After several tests it was determined but her spleen was extremely enlarged. They were sure that it would go down on it’s own but were concerned with the fact that she would take no liquids. We decided to check her into the hospital and start her on IV’s. Ashley has never had an easy time getting IV’s in or blood drawn and this time was just as bad. Once the IV’s were started she seemed to settle down but that evening she began to complain again. A surgeon was called in and Ashley was diagnosed with splenic torsion. Her spleen had become twisted on it’s blood supply and was becoming engorged. Surgery was required. A call to our pediatric surgeon in Omaha was made and for the 3rd time Ashley was in an ambulance heading for Omaha. Surgery went well and they felt that they had managed to get to the spleen in time to save it. However within 12 hours of surgery Ashley developed a fever and as was feared the spleen was losing function. Nothing more could be done to save it. Ashley recently underwent another radioactive scan and there is some spleen activity but it is very little. Ashley now takes 1 teaspoon of Amoxicillian every day as a preventative measure.

Ashley is currently planning her 7th birthday party next month. She is having difficulty deciding whether to have it at McDonalds, Amigos, or the bowling alley. She has several best friends, receives nothing but praise from her teachers, runs with her sisters and loves bouncing on the trampoline. The doctors told us that Ashley could do everything a normal child could do but that she would never be able to do some things like track. I foresee Ashley as proving them wrong. She may just surprise them and end up being in the Olympics or Boston Marathon. There is nothing these children should be limited on. Ashley is missing the lower lobe of her left lung and when she was a child she would often get winded. Now when we go to the zoo she runs ahead of us, back to us, ahead of us and back again. She seems to have unlimited energy and I do not notice her getting winded. But then an ear infection strikes and we are back on breathing treatments. Never take anything for granted. Live each day with them to the fullest. And remember to let them live it to the fullest also. It is very hard not to smother them with protection. My mother would have preferred to have built her a bubble to live in but Ashley loves living in the real world.


Written by Ashley's mom, Denise Meyers (Nevada)

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

 

 

 

April 1 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today is the first day of National Congenital Diaphragmatic Hernia Awareness Month!

We have so many events going on for this month to not only raise CDH Awareness, but to take ACTION against this horrible birth defect!  Here are the ones we have announced thus far:

April Congenital Diaphragmatic Hernia Awareness Month

• April 4th - CHERUBS Ohio Easter Egg Hunt - Columbus, Ohio
• April 11th - CHERUBS St. Louis Get Together - St. Louis, Missouri 
• April 18th - CHERUBS California Picnic - Clovis, California
• April 18th - CDH Awareness Bee's Baseball Game- Salt Lake City, Utah
• April 18th - CHERUBS Philadelphia, PA Get Together - Philadelphia, Pennsylvania
• April 19th - Congenital Diaphragmatic Hernia Action Day - World Wide
• April 19th - CHERUBS Louisiana Get Together - Thibodaux, Louisiana 
• April 19th - CHERUBS Colorado Get Together - Aurora, Colorado
• April 19th - Las Vegas 51's CDH Awareness Baseball Game - Las Vegas, Nevada
• April 19th - Texas Family Picnic for CDH Action Day - North Richland Hills, Texas
• April 29th - 30th - CDH Awareness on Capitol Hill - Washington, DC

2015 Lights

1. PECO Crown Lights will read "April 19th is Congenital Diaphragmatic Hernia Action Day"- Philadelphia, Pennsylvania 
2. Terminal Tower- Cleveland, Ohio
3. The Leonard P. Zakim Bunker Hill Memorial Bridge- Boston, Massachusetts
4. Saint Louis Science Center's James S. McDonnell Planetarium- Saint Louis, Missouri 
5. Niagara Falls- Canada & the United States
6. The Retirement Systems of Alabama- Montgomery and Mobile, Alabama
7. The Cummings Center- Beverly, Massachusetts 
8. SunTrust Ziggurat- Tampa, Florida  
9. Miami Towers- Miami, Florida

We invite you too, Mr. Sparks, to raise CDH awareness and take action!   You can do so by meeting with us to learn more about how we can work together to give these babies a voice.

Sincerely,

Dawn Torrence Williamson

CHERUBS President 

Determined CDH Mom

March 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are gearing for April, Congenital Diaphragmatic Hernia Awareness Month! 

 

 It's our busiest month of the year and we are so excited to have many incredible people working together this year for the children!  We hope that you will join us!

Sincerely,

Dawn M. Torrence Williamson

CHERUBS President

March 29 - Dear Nicholas Sparks

Dear Mr. Sparks,

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

This proclamation was requested on behalf of the Mason family!

Sincerely,

Dawn Torrence Williamson

CHERUBS President

March 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

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

This proclamation was requested on behalf of the Hawkins family!

Sincerely,

Dawn Torrence Williamson

CHERUBS President

March 27 - Dear Nicholas Sparks

Dear Mr. Sparks,

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

This proclamation was requested on behalf of the Young family!

Sincerely,

Dawn Torrence Williamson

CHERUBS President

March 26 - Dear Nicholas Sparks

Dear Mr. Sparks,

A wonderful thing happened on Capitol Hill today!

Mar 26 2015

Senate Passes Sessions-Sponsored Measure To Recognize April As Congenital Diaphragmatic Hernia Awareness Month

WASHINGTON—U.S. Senator Jeff Sessions (R-AL) issued the following statement today after the Senate unanimously passed his resolution designating April 2015 as National Congenital Diaphragmatic Hernia Awareness Month. Sessions’ grandson, Jim Beau, was born with CDH:

“Congenital Diaphragmatic Hernia is a dangerous birth defect that affects 1 out of every 2,500 babies born each year, yet most people have never heard of it. It is as common as cystic fibrosis and can be deadly.

CDH occurs when a child’s diaphragm does not fully develop, which allows abdominal organs into the chest cavity, preventing healthy lung growth. Complex surgeries can be required, and survivors sometimes face long hospital stays or dependence on ventilation machines.

There is no known cause of CDH, but early detection and good prenatal care can catch the defect early. And, constantly improving medical treatments—together with increased public awareness and research towards a cure—can help children born with CDH live healthy lives unencumbered by their birth defect. I’m glad the Senate has again declared a full month for CDH awareness, and I thank Sen. Cardin for joining with me in this important effort. The resolution builds on the life-saving work done every day by CHERUBS, the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.”

 

Text of A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month”.

This simple resolution was agreed to on March 25, 2015. That is the end of the legislative process for a simple resolution. The text of the bill below is as of Mar 25, 2015 (Resolution Agreed to).

III

114th CONGRESS

1st Session

S. RES. 115

IN THE SENATE OF THE UNITED STATES

March 25, 2015

Mr. Sessions (for himself and Mr. Cardin) submitted the following resolution; which was considered and agreed to

RESOLUTION

Designating April 2015 as National Congenital Diaphragmatic Hernia Awareness Month.

Whereas congenital diaphragmatic hernia (referred to in this preamble as CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth;

Whereas the Centers for Disease Control and Prevention recognizes CDH as a birth defect;

Whereas the majority of CDH patients suffer from underdeveloped lungs or poor pulmonary function;

Whereas babies born with CDH endure extended hospital stays in intensive care with multiple surgeries;

Whereas CDH patients often endure long-term complications, such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders, and developmental delays;

Whereas CDH survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition, and hypoxic brain injury;

Whereas CDH is treated through mechanical ventilation, a heart and lung bypass (commonly known as extracorporeal membrane oxygenation), machines, and surgical repair;

Whereas surgical repair is often not a permanent solution for CDH and can lead to reherniation and require additional surgery;

Whereas CDH is diagnosed in utero in less than 50 percent of cases;

Whereas infants born with CDH have a high mortality rate, ranging from 20 to 60 percent, depending on the severity of the defect and interventions available at delivery;

Whereas CDH has a rate of occurrence of 1 in every 3,800 live births worldwide;

Whereas CDH affects approximately 1,088 babies each year in the United States;

Whereas CDH has affected more than 700,000 babies worldwide since 2000;

Whereas CDH does not discriminate based on race, gender, or socioeconomic status;

Whereas the cause of CDH is unknown;

Whereas the average CDH survivor will face postnatal care of at least $100,000; and

Whereas Federal support for CDH research at the National Institutes of Health for 2014 is estimated to be not more than $2,500,000: Now, therefore, be it

That the Senate—

(1) designates April 2015 as National Congenital Diaphragmatic Hernia Awareness Month;

 

(2) encourages that steps should be taken to—

(A) raise awareness of and increase public knowledge about congenital diaphragmatic hernia (referred to in this resolution as CDH);

(B) inform all Americans about the dangers of CDH, especially those groups that may be disproportionately affected by CDH or have lower survival rates;

(C) disseminate information on the importance of quality neonatal care of CDH patients;

(D) promote quality prenatal care and ultrasounds to detect CDH in utero; and

(E) support research funding of CDH to—

(i) improve screening and treatment for CDH;

(ii) discover the causes of CDH; and

(iii) develop a cure for CDH; and

(3) calls on the people of the United States, interest groups, and affected persons to—

(A) promote awareness of CDH;

(B) take an active role in the fight against this devastating birth defect; and

(C) observe National Congenital Diaphragmatic Hernia Awareness Month with appropriate ceremonies and activities.

 

The statistics written in this Resolution were written by our charity.  Never in a million years did that 22 year old mom who started CHERUBS ever think my words would show up in a United States Senate Resolution.   This is the forth year that Sen. Sessions has sponsored a Resolution for us and every year, it still brings me to tears that our children have a voice on Capitol Hill.

God bless Sen. Sessions for all he does for our children.

Sincerely,

Dawn Torrence Williamson

Very Proud CHERUBS President