Carter's CDH Story
We were so excited to be expecting our first baby. Everything had been so perfect until a 30 minute trasound turned into an hour and half. I knew something was wrong, but all they would tell me was they couldn’t get the pictures they needed. Once we met with the doctor we learned he had a Diaphragmatic Hernia. We are from Dothan, Alabama and traveled to St. Petersburg, Fl. to Johns Hopkins All Childrens for treatment. We were in St. Petersburg, Fl. for 112 days and Carter spent 91 days in the hospital.
Carter was diagnosed with CDH at 20 weeks at the routine anatomy scan ultrasound appointment. My husband wasn't able to come to this scan due to work, but I told him it would be okay (I thought surely everything will be perfect- my whole pregnancy had been!), but thankfully my mother came at the last minute. What was supposed to be a 30 minute ultrasound turned into an hour and half with three different ultrasound technicians. I knew something was wrong; however, the sonographers kept saying they could not get the right images. Finally I was able to see my OB and learned he had a Diaphragmatic Hernia. You immediately think “hernia”- people get those all of the time, but the look on my doctors face told me it wasn’t that simple. My doctor told me that this was only the second diaphragmatic hernia he had ever seen.
From there my OB sent me to a high risk OB to get a confirmed diagnosis and determine what to do from there. We were referred to Sacred Heart in Pensacola, Fl . There Carter's diagnosis was confirmed; however, we quickly learned he could not be treated there. The doctor stated "I have to ask you this next question and it'll determine where we go from here, are you interested in terminating the pregnancy?" I was completely caught off guard and speechless because the possibility of termination had not even crossed my mind. I thought how can this be? I already knew we were having a boy and had given him name. Being asked this question made me feel like there wasn't a lot of hope, but I knew it was not an option because Carter belonged to God and we trusted in Him. From there we started figuring out what we were going to do to save our baby's life. We were recommended to go to Philadelphia, Denver, or Houston and we were told we would have the in-utero tracheal occlusion surgery at 27 weeks pregnant. After a week of phone calls and research on our own, we learned that the Children's Hospital of Alabama treats babies with CDH, so we made plans for appointments and to deliver there. We also learned that the inutero surgery is still experimental and can cause other risks, so we opted out of even considering that surgery. Alabama gave us a 50% chance of survival.
We continued our appointments and had an induction scheduled for June 28th in Alabama. At 32 weeks our local newspaper wrote a Mother's Day article on our story and by the grace of God some of Joy's relatives that live in the same town as us saw the article. Through mutual friends, I am quickly given Joy's information and phone number. Also the day after I found out about Joy, I had six different mothers message me to tell me about Dr. Kays along with their child's CDH story. I knew this was a sign! I immediately contacted Joy and within ten minutes of our conversation I knew we had to get to south Florida somehow, someway. At 36 weeks pregnant we packed up our things and relocated to St. Petersburg, Fl. Dr. Kays gave Carter a 95% chance of survival with a 75% chance of needing ECMO.
Our induction was scheduled for June 27th, 2017 (also my birthday). We checked into the hospital the night of June 26th and during the night they begin the induction process. I did not progress at all during the night and the next day (the 27th). I never progressed beyond 1 cm so on the 28th Dr. Kays came in the room and asked how I felt about having a c section. We were completley okay with that option at this point. Carter was born at 1:42 P.M. on June 28th at 4 lbs and 4 oz. Carter did not make a sound and the only way I knew he was born was because the doctors yelled the baby is out. After a few seconds (which felt like a lifetime) of not even knowing if he was alive, I ask the OB if he was okay. She looked in the Operation Room next door where Carter was being cared for and she was given a thumbs up. Dr. Kays and his team brought Carter to my side and held him up so I could see him before they took him to the CVICU, by this time he was already intubated. Brandon went with Carter to the CVICU and stayed with him while my family stayed with me in recovery. I was not able to go see Carter for nine hours after birth due to the c section.
At 26 hours old Carter was placed on ECMO. Because Carter was liver down, Dr. Kays felt it was best to do his repair surgery once he came off of Ecmo. Carter was off of ECMO at nine days old and had his repair at eleven days old. There were some concerns that his bowel was not in tact, but during the repair surgery it was determined that his bowel was in tact and there were no complications with his intestines. Before his surgery, Carter was diagnosed with a moderate L-CDH. We learn after his surgery he had a moderately severe defect with virtually no posterior diaphragm with his small bowel, colon, stomach, and spleen in his chest cavity. Carter also has Neonatal Diabetes which is very rare. Some studies state that 1 in 500,000 babies have Neonatal Diabetes. Carter's Pancreas is severaly low functioning; therefore, his Endoncrine and Exocrine system are impaired. The week we were supposed to be discharged Carter had a set back due to a Pleural Effusion that ended up collapsing his left lung and part of his right lung. Carter had to be placed back on the CPAP and a second chest tube was placed. After a CT scan we learn he had a narrowing the Superior Vena Cava vein as a result of ECMO. Carter ended up having a stent placed in the Superior Vena Cava vein on 9/1/2017. Carter was discharged from the hospital on 9/27/2017. Since we have been home things have been wonderful and we are trying to live life like we have a "normal" baby (with extra germ precautions). Thankfully Carter hasn't had any issues with eating and gaining weight. Carter came home on oxygen, but got to discontinue the oxygen after three months of being home. We follow closely with Endocrinology for his diabetes. He currently gets insulin injections daily and he has a continuous monitor to manage his blood sugars. We see Gastroenterology to manage his exocrine system due to his severely low functioning pancreas, Cardiology, and Dr. Kays. Carter also had two different types of holes in his heart- VSD and PDA. At our latest echocardiogram it was determined the VSD had closed, but the PDA has not. However, he is having no complications from this so at this time we will need no intervention.
He is doing great!