Declan’s Story - Congenital Diaphragmatic Hernia (CDH)

Like every other parent, my boyfriend Ethan and I were very excited to go into our 20-week anatomy appointment and find out the gender of our first child. At first, we were told his heart was shifted and that they suspected he had dextrocardia, but they were going to send us to a Maternal-Fetal Medicine doctor for a second opinion. At the MFM doctor is where we heard the 3 dreaded words, "Congenital Diaphragmatic Hernia." The doctor said that from what she could see, it looked like he only had a 40% chance of survival. She went on to tell us we should terminate our pregnancy, which we refused. After coming home from a silent and tearful car ride, Ethan and I sat down and researched all about CDH. We found that the Children's Hospital of Philadelphia (CHOP) specialized in CDH, and we instantly called!

We were seen at CHOP within two weeks and underwent an MRI, lengthy ultrasounds, and an echocardiogram. After all that, we sat down and consulted with the doctor. They told us that Declan now had an 80- 90% survival rate. Due to out of state insurance, CHOP was no longer available to us, but they did suggest Duke University in Durham, NC. So all my care was transferred there. Every week, Ethan and I would travel 4 hours there and back to MFM appointments to give Declan the best care since the doctors in Virginia (where we live) didn't give Declan a good survival rate. Eventually, I relocated to Durham, and Declan was born on September 21, 2019. He did better than they excepted. His repair surgery was done at two days old, and by day 7 of life, he was off the ventilator, and Ethan and I were able to hold him! Every day, he kept getting stronger. By day 13, I was breastfeeding him. Declan passed every single test, and on day 26 of being in the NICU, we were discharged home. Since then, we've gotten all-clear at every pediatrician appointment he has had!

However, in November of 2020, Declan had a second surgery because his diaphragm hole had opened up again. After four days of being in the hospital, we were discharged home. Declan is now 16 months and just thriving, and at every appointment, he amazes his pediatrician. We are very proud and thank God every day for our Tiny Hero!