Wyatt’s Story - Congenital Diaphragmatic Hernia (CDH)

Wyatt is 8 years old and a Left Congenital Diaphragmatic Hernia Survivor! Wyatt's CDH journey began around 30 weeks gestation when I was admitted to the hospital with blood pressure issues. Just to back up a bit, Wyatt was my third pregnancy (I had a 13-year-old son and a 4-year-old son at the time), and up until that point, everything with the pregnancy had been normal! Our 20-week anatomy scan looked great and came back normal! So, while I was hospitalized with high blood pressure, my OB doctor felt that it would be a good idea for the high-risk doctor to do an ultrasound while I was there to make sure Wyatt was growing correctly since high blood pressure can cause a baby's growth to slow down. My husband and I weren't concerned at this point, and we were excited to get to "see" our little one! During the ultrasound, the doctor noticed that Wyatt's heart was shifted a little more towards the middle of his chest and that a kidney was elevated, but he didn't seem to be overly concerned and said that it could just be his normal and wanted us to come back in about four weeks to get a recheck! I was given three steroid injections that would help mature the baby's lungs in case he would need to be delivered early due to my elevated blood pressure but, amazingly, by the next day, my blood pressure issues seem to stabilize! I was released from the hospital with some bed rest orders and frequent monitoring.

Of course, we were a bit worried about the ultrasound, but the weeks passed quickly, and I went for the follow-up ultrasound with the high-risk doctor. My husband actually did not go with me that day because we really felt that everything was fine, and it was just a precautionary measure and didn't want him to miss work when we knew he would need days off for the upcoming birth(he had just started a new job). So I get to my appointment, and the ultrasound tech begins. She is doing her measurements, and I was chatting with her, and I noticed that she got really quiet and seemed concerned! I am a nurse, so I quickly recognized that something was not right, and she excused herself from the room and said she would get the doctor to come in now. Of course, I was so scared at that point, and the doctor came in and began looking at the ultrasound for a bit and then told me, "your baby has a serious condition known as Congenital Diaphragmatic Hernia (CDH)." He went on to say that he would need to be born in a larger hospital with more advanced equipment, and I'm sure said more, but I was in such shock I don't even remember at that point! They told me my OB would call me with an appointment time with a new OB in Atlanta (we live 3 1/2 hours south of Atlanta). I remember just breaking down right then and there, and it took me a while to compose myself before I left the office. Once I got in my car before I even called my husband, I did the worst thing possible, and I googled CDH. Of course, what I read scared me even more, and to see the horrific statistics for CDH babies shook me to my core! I called my husband and tried to break the news to him as best I could. This was the first of December 2012.

My first appointment with our new team of specialists was scheduled for the day after Christmas. I had begun having preterm contractions around 33 weeks (my 2nd son was born at 37 weeks), so we were really just praying that he stayed put until we could get to our doctors in Atlanta! My mother joined us on our trip, and my dad stayed back and took care of our other two boys. At this first appointment, I met with the high-risk doctor, and he went over everything and told us that he wanted me to come back at 39 weeks and plan to stay up there at that point. We voiced our concern that I was already having preterm contractions, and my other 2 were fast labors(even though my 2nd ended in a C-section), and the doctor decided to hook me up to a monitor to see if I was having any contractions. It took about 30 minutes, and he came back into the room and said that "I just bought myself a ticket to Labor and Delivery" and that I would spend the remainder of my pregnancy in the hospital!

Honestly, we were relieved to hear this because we were so worried that he was going to come early, and our hunch was correct!! Wyatt was born by C-section at 36 weeks! We really seemed to have no time to truly prepare ourselves and educate ourselves on CDH! Wyatt weighed in at 6lbs 3 oz, and he did let out a little cry before they whisked him away to intubate and stabilize him! I went to recovery, and my husband stayed as close to Wyatt as he could! He was born with LCDH, and all of his intestines and spleen were in his chest cavity. Wyatt did not require ECMO and had his repair surgery on his 3rd day of life! His surgeon, Dr. Clifton, was able to do the repair laparoscopically, but he did have to place a small patch, and it was anchored to his rib! He was a strong little boy and did really well in the NICU! The nurses and doctors all joked that "Wyatt didn't know he was sick, and nobody was to tell him!"

He spent a total of only 23 days in the NICU, and we actually were able to transfer him back to our local hospital's NICU about a week before he was completely discharged! Wyatt came home without oxygen or even a feeding tube! He was breastfeeding and bottle feeding (so we could add some extra supplements for the calories). He has continued to amaze everyone since! He did require surgery at 1 1/2 years old for an undescended testicle repair and Inguinal Hernia repair! Wyatt was otherwise healthy, and we didn't seem to have any major health issues until Wyatt was around 5 years old! He started having unexplained abdominal pains that we couldn't find the source of! He had X-rays, upper GI series, 3 EGD's with biopsy, and multiple doctor visits over the course of a year! His pediatrician, his surgeon, and his GI specialists couldn't figure it out! All of the tests came back normal! Finally, his surgeon decided it was time to do an abdominal diagnostic laparoscopy, thinking that maybe Wyatt had some adhesions or scar tissue that was causing the pain, but to everyone's surprise, he had actually reherniated!!

At that point, nothing was up in his chest cavity, but he had to finish the laparoscopy and begin a new surgery to repair the reherniation! His surgeon placed a new patch, and Wyatt did great through the procedure! He spent 5 days in the hospital but was once again a champ! He seemed to be rid of his abdominal pain, but it was short-lived! About 6 months after his repair, he began experiencing abdominal pain again! We are still trying to determine the cause, and we have had all the same tests done, including an MRI and another abdominal diagnostic laparoscopy!

Wyatt doesn't let anything stop him! He is full of energy, loves being outside, swimming, fishing, and playing baseball! He has also been diagnosed with scoliosis and is now bracing for 16 hours a day! He is such a fighter, and we know that he is destined for great things in his very bright future! We are so thankful for Tiny Hero and the support they give to CDH families around the country!