Taylor's Story - Congenital Diaphragmatic Hernia (CDH)

 I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors notice something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away, so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old, I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult, but I was a five-pound baby with that size of hole. They used a mesh patch to repair the hole. I was able to come off ECMO shortly after my repair. One month later, I broke out of the NICU and got to go home! 

By the age of 7, I was on my fourth repair. I had three of them before the age of two and then at the age of seven they discovered I reherniated again. This was the first surgery I remember (Thank the Lord), but my parents can remember every one of them. They were, and still are, my rocks. Up to my fourth repair my parents treated me the same way they treated my two older sisters, I had a normal childhood filled with running, playing, and getting to be a kid. 

During my fourth repair, I ended up having a hole in my bowel from it sneaking up into my chest, but none of this slowed me down. Two months after my surgery, I was running the mile in PE with all my friends! 

Throughout my childhood I tried an assortment of sports but one sport in particular I played all the way through my senior year, softball. I don’t have two full functioning lungs, but I don’t let it slow me down.

Winter of 2010, I ended up getting bronchitis, which saved my life. What I thought was chest pain from the coughing and/or acid reflex ended up being my stomach up in my chest. After several X-rays and CT scans, they were pretty sure it wasn’t asthma or acid reflex that was causing my pain, it was that I reherniated for the fifth time.

At the age of 20, while just getting accepted into the nursing program and finishing up my last year at the community college this curveball was thrown at me. Thank the Lord for my rocks; my mom was the one who reconnected with my old surgeon whom assisted with three of my four previous repairs. Dr. R whom works at Children’s Hospital in Omaha, NE didn’t hesitate at all and agreed to look at the X-rays and take me on as a patient again.

May 10th, 2011, I conquered what Dr. R says was a surgery comparable to my very first one. When they opened me up, they discovered my stomach up to my 7th rib, and my entire left side gone, they also found my gortex patch balled up in the corner. Dr. R felt like we needed to try a different kind of patch this time around due to the gortex patches not holding up. Dr R performed his very first and only reverse latissimus dorsi, in order for him to get my muscle to lay down properly he removed six inches of my ninth rib. My mom always jokes she took me in as a 20-year-old and brought home a 60-year-old. That surgery aged me, gave me new limits, chronic pain, a beautiful new scar as well as a dip or as my family calls it blow hole on my left side. 

August 2011, I started nursing school; graduated two years later with my RN, BSN. I married the man who stuck by my side through my last surgery and nursing school.

My husband and I then took the leap of faith not only once, but twice and have two beautiful, healthy children. I am Dr. R’s oldest and most challenging patient as well as my perinatologist’s first CDH case. Pregnancy was rough on me and my babies. I was proud to make it to 34 weeks for both pregnancies, with both my babies being diagnosed with IUGR. After our second baby, we had three doctors tell us we have pressed our luck enough; it was a hard pill to swallow but makes me cherish each moment with my babies even more. 

In 27 years, I’ve conquered 10 surgeries, 5 repairs, graduated with my RN, BSN, now working in a hospital and became a wife to an amazing husband and proud mama of two! 

Beating the odds one breath at a time!

Update: It has been five years since my last baby and eleven years since my last diaphragm repair. I still deal with my daily pain. Some days are better than others. I struggle to gain weight (my husband always says I eat it, and he gains the weight), and I tire easier than others my age. Still, I won’t let that stop me! I run around with my kids, and I work part-time as a floor nurse at a hospital. This last summer, I coached my kid's t-ball team.

I use what I have been through as my launch pad, as my parents have always taught me, the sky is the limit!