Our CDH Diagnosis Journey

Like most couples, we went into our 20 week ultrasound full of excitement to finally get a good look at our baby. Little did we know this was going to be the beginning of a crazy journey. After the ultrasound, our OB told us there was something they were concerned about and she thought the baby may have a Congenital Diaphragmatic Hernia. What? The tech didn't say a word to us and we were able to see all of the cute arms, legs, fingers, toes, and squishy face. She recommended we go to another hospital for a consult and said not to google anything. Much easier said than done! Our small town hospital did not have the doctors, facility, or knowledge to treat our baby if they did indeed have the condition.

A Congenital Diaphragmatic Hernia (CDH for short) is when a hole forms in the baby's diaphragm in utero. This hole allows organs that do not belong in the chest (stomach, spleen, liver, intestines, etc.) to move up into the chest cavity compressing the heart and lungs and limiting growth. 1 in every 2,500 babies in the US are actually born with CDH. The condition is as common as cystic fibrosis or spina bifida. How had we never heard of this condition before? CDH is a life-threatening condition with a current survival rate of about 50% thanks to modern medicine. Read more about CDH here.

Initially, we scheduled a consult at Magee Hospital in Pittsburgh (at 21 weeks). We figured if we were going to need to relocate for delivery and treatment that being close to family and friends would be helpful. We went for our appointment with a much more detailed ultrasound to determine if the baby truly did have CDH. Our worst fears were confirmed when the doctor told us that the baby did indeed have a left-sided hernia and their stomach, intestines, bowel, and half of their liver were in their chest cavity. We were heartbroken and the counselor started talking to us about possible termination and palliative care. There are no words to describe how we were feeling. We had always discussed that we would love any baby no matter what. We left feeling defeated and wondered what kinds of outcomes could we expect for our little one?

After a bit of research, we discovered the Children's Hospital of Philadelphia (CHOP) had an intensive program for babies with CDH. We schedule another consult there in early October (22 weeks) with a team of medical experts who have studied CDH for their entire careers. They ran ultrasounds, an MRI, and a fetal echocardiogram. It was a long day, but it ended with some hopeful news - the baby had a moderate to severe hernia (LHR of .8), but they were given an 80-85% chance of survival. They talked about how different this delivery would look, and that we could anticipate a 3-4 month NICU stay. Every baby is different and there are no real answers until the baby is born. The road was not going to be easy or short but they truly felt like our little one stood a fighting chance. After some careful consideration we decided to move forward having our prenatal visits at CHOP and planned to deliver there.

Getting to see baby at CHOP Ultrasound at 22 weeks!

We knew the delivery was going to look different as well. They also have a Special Delivery Unit (SDU) one of the first in the country. This special room allows you to deliver your baby in whichever way you and the team agree upon, and then they can be quickly passed through a window to a stabilization room where everything the baby could need is available. It was nice knowing I would be able to deliver and recover in the same hospital as the baby. As soon as the baby was born, she was taken immediately to the stabilization room and placed on a ventilator. Dustin was able to cut her cord, but we were not able to touch or hold her.

Each and every baby with CDH is so very different. Although they were able to provide some answers to us during ultrasounds and prenatal monitoring there are so many unknowns. Our surgeon (Dr. Holly Hedrick) at CHOP focuses on first establishing stability - many babies with CDH also have some type of heart issue because of the pressure from the other organs. Once the baby has shown they are stable and their heart can handle the repair, the team goes into the NICU and repairs the hernia in the room! Modern technology is truly quite amazing. Navy needs support to help her breathe because her lungs were squished by the other organs during her time in utero. We still aren't sure how much function her lungs have, as they can continue to grow through childhood.

After coming to terms with our diagnosis, I began having some pretty intense anxiety and stress about our future. I was such a planner and to have so many unknowns ahead of us was difficult. I decided to start seeing a therapist weekly and I cannot express how helpful that was. She helped me focus on what I could control, keeping positive, and practicing mindfulness. Mental health is such an overlooked area of need, and I was grateful to have a resource to help me through this transition. Knowing your child is going to be born with a life-threatening condition is not easy, and I have learned that I am not alone. There are many fantastic support groups like Tiny Hero & CHERUBS who have provided advice and support along the way. To say this pregnancy was treated differently is an understatement. Each time someone asked how I was feeling I had to decide to be honest about my fears, hopes, and dreams, or just say things were great! We tried to maintain a positive outlook that our baby stood a great chance at life after birth.

We traveled back and forth to CHOP every 4 weeks until week 34, when our visits became weekly. Each visit included an in depth ultrasound, some fetal echocardiograms, and an initial MRI. It was nice to get to check in on the baby so much more frequently than with Dexter, but we also knew the baby had a life-threatening condition. At 35 weeks we re-located to Philadelphia using a wonderful program called Hosts for Hospitals where individuals offer up spaces in their homes for hospital patients. We were so grateful to have a place to stay while I continued my prenatal monitoring. My induction was scheduled for Monday, January 28th at a little over 39 weeks. As the time got closer, I was more and more anxious- I was able to keep her safe when she was in my belly, but the real challenge came when she was born.

I went into labor just a few days before my induction and our sweet Navy Laurel was born on January 26, 2019 at 8:39 pm in the Special Delivery Unit at CHOP. It was a very special experience finally getting to meet her. I will share her birth story soon. We know our little one is not going to have it easy - and we hope that by sharing this journey we can help educate others about what CDH is and its far-reaching outcomes. Our little one is a strong warrior and we are hopeful that they will be able to live as normal of a life as possible. We could not be more proud to be your parents little Navy Laurel.