Emerie's Story - Congenital Diaphragmatic Hernia (CDH)

Emerie Elise was born with CDH in March 2017. Before her birth, we had no idea anything was wrong with her. The hernia was not detected at our 20-week ultrasound. My pregnancy was completely normal. I ate really well and exercised daily, and overall by 40 weeks, I felt fantastic! She was born into the water at a beautiful out-of-hospital birthing center following a fairly “easy” 5 hour, natural labor. In the first minute, we could tell something wasn’t right. She grunted but struggled to really cry. The midwives immediately went to work on her, attempting to suction any mucus that may be inhibiting her from giving us a strong cry, but there was no mucus. Right when we really started worrying, an ambulance arrived. The midwives, we later learned, had already made the call. She was transferred immediately to Children’s Hospital of Wisconsin with Sam, my husband, riding along. During that ambulance ride, they lost her heartbeat. She required CPR and resuscitation upon arrival at the hospital, and thank God, she was successfully revived. Her CDH was found immediately on the X-ray following intubation. Sam called with the news and we were so confused. We had never heard of this before. Just a hernia? That didn’t seem so bad. I felt relief at first. About an hour after her birth, I was able to leave the birth center and meet Sam and my mother at the hospital. We then learned that this was a lot more than “just a hernia.” The doctors worried about brain damage due to loss of oxygen and immediately started her on a cooling protocol to halt any damage that may have occurred.

All in all, she was doing well. However, by the next evening, she started losing the ability to oxygenate. After 3 hours of hand bagging, we were told about ECMO, which sounded like the most terrifying thing we could imagine. Having no preparation or knowledge of how common this measure is for these babies made it all the more terrifying. We were told it was that or we let her go. We immediately consented. That first day was definitely the hardest for me. You never in a million years imagine the first week of your baby’s life looking like this. But we were so thankful she was still with us and had faith that God would use the skilled doctors to do miracles in her little body. She spent 8 days on ECMO. She was taken off on the first attempt! Three days later she had her repair surgery. She did beautifully. We discovered that her liver was up and very large, her spleen was in her shoulder and “everything wanted to be up in the penthouse,” as our brilliant surgeon, Dr. Arca, put it. We had hoped since her defect was missed on the ultrasound, that maybe it wasn’t so bad and her lung would be bigger. Dr. Arca said she was a little sad to see it was small to moderate. However, the hole was small, meaning it didn’t require a patch, which was a huge answer to prayer. We also discovered that Emerie had a “hernia sac” meaning that her abdominal organs were still contained in the membrane, allowing Dr. Arca to just push the sac back down. We believe this may be part of the reason why Emerie doesn’t suffer from reflux, constipation or gastrointestinal issues.

From there, we worked on feedings and weaning from the narcotics, and with much prayer and faith, she soared, exceeding all expectations. She nursed for the first time at about 4 weeks old, and took 20 cc by breast her first try! Having nursed my older daughter, Sadie until she was 3, this was one of my biggest prayers! She continued nursing well, and with a little back and forth, we quickly worked her up to full feeds by breast. We found during an MRI that her brain was completely perfect in every way. There was no damage from her traumatic birth, and we continued to believe that she would have an exceptional brain! We were warned that feedings and weaning from the methadone would likely be the longest part of this journey, but I told the nurses and doctors daily that I was going to be bringing her home by Mother’s Day. I’m sure I was quickly labeled as the stubborn mother, but fortunately for me, Emerie seemed to agree that mom was right on this one.

We brought our beautiful miracle home at 6 1/2 weeks old. She required no oxygen, no medications, or feeding assistance. She was home 4 days before Mother’s Day, which we spent snuggling outside on the patio, soaking up the fresh, outdoor air and sunshine. Emerie is 2 years old now. She is the smartest, silliest, most strong-willed child I’ve ever known. She has met all of her milestones early. She runs, climbs, plays, eats, talks, and breathes like any other toddler, only she’s even more busy than your average two-year-old! She still loves to breastfeed, “sissy” is her best friend, and she currently has a strong obsession with dinosaurs. Every day, watching her is a reminder that miracles still happen. We are so thankful for the midwives quick and expert response during her birth, the incredible team at Children’s Hospital Wisconsin for the amazing care she received, and for her Heavenly Father’s protection over her. We are truly blessed with our precious miracle.

2024 Update

Today, Emmie is a completely perfect and healthy (almost) 7-year-old! She loves homeschooling, her big sister, and playing with her friends and family. She is an incredible little builder and delights in showing off her newest creations — from Lego structures to elaborate forts. She loves slime and coming up with various new things to put in it. She claims that when she grows up, she wants to be a builder, a scientist, a hairstylist, or a masseuse, and she would like to sing at a pub on Wednesday nights.

Emerie continues to see her surgeon once a year for an annual x-ray to check on her diaphragm, which is so fun for her. She loves to see her chest picture! Her surgeon jokingly kicks us out within minutes these days because we are “just too boring” (in the absolute best way possible).

Our life truly is one “after CDH” and not “with CDH.”

At one point in time, it was utterly unfathomable to think that CDH wouldn’t be something I thought of daily. But I can go weeks without it even crossing my mind these days. It’s not lost on me what a blessing that is. Emmie is such a joy to everyone who knows her; she completes our family, and we just can’t imagine life without our little warrior. We are so grateful!