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Sarah and Kyle Nachman with their son, Abel

Miracle Marathon: Mom shares her journey that began well before her son was born

Our younger son, Abel, was diagnosed with myelomeningocele, a severe form of spina bifida, when I was 20 weeks pregnant. Two weeks later, my husband Kyle and I drove from Oshkosh to meet the Fetal Concerns Center team to undergo testing and learn about our options fortreatment. We arrived at Children’s Hospital of Wisconsin afraid and with a very limited understanding of how this diagnosis would affect our baby. Over two days, we met with the team that would care for Abel throughout the remainder of my pregnancy. We learned more about his diagnosis, our options for treatment and the care he would receive after he was born.

At 24 weeks, Abel and I underwent fetal surgery through the Fetal Concerns Center at Children’s Hospital of Wisconsin. Then at 32 weeks, he was born at our local hospital and transported to the Neonatal Intensive Care Unit at Children’s Hospital of Wisconsin in Milwaukee. Abel was larger than expected at 4 lbs. 10 oz., and within the first week, he was breathing on his own and began drinking from a bottle.

Abel recovering in the NICU at Children’s Hospital of Wisconsin when he was 2 weeks old
 
Through the Spina Bifida Program at Children’s Hospital of Wisconsin, Abel began receiving care from team members from many specialties while he was still in the NICU. Without Children’s Hospital of Wisconsin, we wouldn’t have known where to start, what questions to ask, or what specialists Abel needed to see.

For us, the best part about the care Abel receives at Children’s Hospital of Wisconsin is that it has given us our hope back. Spina bifida will always be a part of Abel’s life, and our lives as his family, but his caregivers at Children’s Hospital of Wisconsin help us remember that spina bifida doesn’t have to rule his life. They are with us as we meet new challenges and help us determine the best path for Abel while always being mindful that his quality of life is what matters most.

There is nothing he can’t do

In late April, I was holding Abel when we learned that he was developing hydrocephalus and needed surgery the next week to treat it with a shunt. I asked Dr. Foy, our neurosurgeon, “what can’t he do once he has a shunt?” We have a very active 3-year-old son, and I was trying to imagine how I would protect Abel as he grows and becomes more active. How would I say “no” when he asks to do certain activities or participate in sports with his friends? Dr. Foy answered, “there is nothing he can’t do.” That was the answer I needed to hear and a message I need to remember as he grows.

We are so looking forward to sharing our story May 25-26 during the 20th anniversary of the WKLH Miracle Marathon for Children’s Hospital of Wisconsin, and hearing the incredible stories of other families who have been impacted by the care provided at Children’s Hospital of Wisconsin. You can listen live on 96.5 WKLH or online at chw.org/miraclemarathon.