By Janell Schwarz
Mommy to Chanse Schwarz
Congenital Diaphragmatic Hernia
I found out I was pregnant at 13 weeks. I went in for a routine sonogram at 14 weeks with my OBGYN in Topeka, and I knew then I was having a BOY! This pregnancy was unexpected (I already had three living girls and I had a daughter pass away in the NICU in 2016), but because I was having a boy I was excited.
At 18 weeks I went in for another sonogram and this diagnosis of Congenital Diaphragmatic Hernia I have never heard of. One of the doctors came in and told me not to Google this condition, that it would only worry me. She also said she was going to have me go to a maternal fetal medicine doctor to confirm this diagnosis and I was referred to KU Medical. A couple weeks later I went in for an hour-long sonogram and testing. At the end of the appointment the doctor gave me confirmed diagnosis of CDH, and said I had three options: go to Texas Children’s if accepted to have an in-utero surgery to give my son a chance at life; abortion; or give birth just to say goodbye.
Abortion was out of the question for me, so I went through all the testing for the in-utero surgery. The amniocentesis showed no genetic disorders. I was eventually denied the surgery based off my two previous pre-term deliveries, but they still offered to deliver my baby.
I didn’t have another option after being denied the surgery. At this point all my questions were unanswered, nobody would give me any hope. I went through months of getting nothing. I decided against their hospital because Children’s Mercy could offer the same just an hour away from home. Fortunately, when I was eight months pregnant, I found a CDH support group on Facebook; seeing all the wonderful stories and outcomes gave me hope.
When I was seven months, I fell down my basement stairs. The high risk OBGYN I was seeing through KU Medical refused to see me because I had decided to deliver at a different hospital, so I had to find another high risk doctor in the Topeka area, and was told I couldn’t work anymore and would be on monitored bed rest until I give birth.
Because I would be delivering at Children’s Mercy, I stayed at the Ronald McDonald House in Kansas City for two months, and at 39 weeks, Chanse was born during a scheduled c-section on September 23, 2019. My best friend was in the OR with me. Lots of laughs and no tears! I wanted this to be a happy moment, not sad and emotional. Chanse wasn’t breathing when he was born, which was expected but he did make a noise. He was rushed to the NICU.
I didn’t get to see my son until six hours later, when they needed me to sign release papers to place my son on ECMO (a machine that does all the work of the lungs and heart). Once he was stable, I got to actually see him, study everything about him: his skin, his hands and feet. He was perfect even if he was attached to a cannula, lines, wires and so many different machines. He was the one I’ve been waiting on for years. My first son, and my only son.
Chanse had his first diaphragm repair surgery at 18 hours old. And he was on ECMO for 23 days. The day came to take him off and the doctors had no faith that he would survive, but he came off and did amazing! At two months old he was on .2L of oxygen and thriving! He still had a long NICU journey of 6.5 months, during which time he received a g-tube.
On Angels’ Wings did pics in the NICU when Chanse was just over a month old. It was a blessing to have someone capture his journey and put it in a photograph. When you’re a NICU mamma, things aren’t easy. You don’t get to hold your baby as you would like to, you miss out on all the “firsts.” OAW came to take photos around the time I got “firsts” with my son. It is a memory I’ll forever have and framed on my wall. They did another session last fall too.
At 10 months old, in July of 2020, his diaphragm patch came loose, and his bowels were in his chest. Since the herniation was discovered while he was out-patient at the beginning of the pandemic, he didn’t get surgery to repair it until April of 2021. He had a hard time after with lots of complications but was discharged after 14 days.
He’s been thriving up last fall, when his diaphragm patch herniated again. He had his most recent correction surgery on October 3, 2022, just a couple of weeks after his third birthday. He did so much better recovering this time, with just a five-day inpatient stay.
He has been g-tube fed since he was six months old, but is eating more by mouth now. His journey the last three years has been full of ups and downs and many setbacks but he comes out stronger each time. He has done so well since being back home.
We live about an hour from Kansas City, but that’s where Chanse goes for care. Busy, busy with many trips to and from KC for routine checkups. At first several long full days at the hospital. Slowly over the years, appointments have been shorter. I think we finally have reached our “normal,” if there is such a thing. We’re stable and thriving! I’m hoping one day he can say goodbye to his g-tube.
