Aubrey’s Story - Congenital Diaphragmatic Hernia (CDH)
I was 20-weeks pregnant, my husband and I were beyond excited and grateful after successfully completing IVF and getting pregnant after three years of trying to conceive. I was on my way to my 20-week appointment for a routine check-up. It was right when the pandemic started, so my husband could not accompany me to the appointment. The appointment took over two hours long, and the nurse was going back and forth from the room to speak with the doctor, and I realized something was off at this point. The doctor came in, sat down next to me, and said, "I'm sorry to tell you this, but there is an issue with your baby." My heart dropped, and I remember feeling like I was going to puke the entire time he was speaking. The doctor said, "Your baby has a defect called Congenital Diaphragmatic Hernia." The doctor briefly described the condition but admitted he did not know much about it, as it was not a common defect. He handed me some paperwork, with a card for Dr. Kay's at Johns Hopkins All Children's Hospital.
Naturally, the first thing my husband and I did was begin to research CDH. It was scary reading about this condition and reading that only 50% of babies with CDH survive. We then found a group on Facebook called "Tiny Hero: A Real Hope for Congenital Diaphragmatic Hernia," a group for families to share experiences, knowledge, and most importantly, to give support to each other. When we made our first post on the page asking for advice, I just remember seeing the name "Dr. Kays" pop up over and over again. I remember people telling us they traveled across the country to see this remarkable specialist. It did not take very long for my husband and I to realize how fortunate we were to be living an hour away from Dr. Kays and his medical team at JHACH. Just hours before finding this information, we were devastated and felt hopeless. After joining this support group and hearing about countless families' experience with CDH, we knew there was hope and began to feel confident, blessed, and very thankful.
We met with Dr. Kays in May of 2020, and after completing several tests, he informed us that Aubrey had an 80% chance of needing ECMO, but more importantly, he gave her a 90% chance of survival. 90% was much more than what we had previously seen during our research, and we knew then we were in the best hands possible. Aubrey had 35% of her liver up in the left side of her chest, along with her spleen, stomach, and both large and small intestines. We went over several other numbers that day, but the 90% chance of survival was the one we held on to. In addition to the CDH, Aubrey also had multiple Congenital Heart Defects due to her heart being crowded by the other organs in her chest cavity.
On July 20th, 2020, the world was introduced to Aubrey Jane Bourne via Cesarean Section. During this time, the hospital had a strict "One Parent Visitation" policy in force due to the pandemic. Fortunately, they did make an exception to allow my husband to be there during the delivery. Aubrey had her repair surgery on July 24th, just 4 days later. Dr. Kays had informed us that 80% of her diaphragm was missing and repaired with a Gortex patch. Amazingly, Aubrey was able to battle through without the need for ECMO. She made improvements almost daily and was extubated on August 7th. On August 8th, after 19 days, we got to hold her for the first time. With each day, Aubrey began to strengthen her lungs and breathe more and more on her own. She began to drink more and more breast milk, fortified with formula to get her big and strong.
On September 3rd, the day had finally come; it was time for discharge. After 45 days, we took our sweet girl home. For the first time, my husband and I got to hold Aubrey and see her together as a family. While at home, Aubrey was on oxygen at night and while in her car seat. On November 2nd, Aubrey had gained enough weight that she was ready to have her 2nd major surgery at only 4 months old. Dr. Quintessenza performed open-heart surgery to repair her Coarctation of her aorta and a large VSD. Aubrey had conquered a major surgery once again and was back home after only five days in the hospital. After her heart surgery, we noticed that Aubrey was much more comfortable and able to eat, sleep, and play without having a difficult time breathing. Three weeks later, Dr. Kays had met with Aubrey for a follow-up appointment and had given us the all-clear to stop Aubrey's oxygen regimen altogether. Fast forward two months, and Aubrey is a happy and healthy six-month-old. She is eating pureed fruits and vegetables along with breast milk, working on rolling over, and having the time of her life in her new bouncer.
As her parents, we could not be more proud of Aubrey's strength. We are very grateful for Dr. Kays, Dr. Quintessenza, and all of the other amazing people at JHACH. Above all, we are grateful for God, and the thousands of prayers he answered, and the people who prayed for our sweet girl.