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Jack's story

During a routine ultrasound, Sara and Wes learned that their son Jack would be born with a rare condition called omphalocele, in which organs normally located in a baby’s abdomen instead develop outside of the body through a hole near the belly button. Their doctor immediately referred the Green Bay family to the Fetal Concerns Center at Children’s Hospital of Wisconsin.

When he was born, Jack spent two and a half weeks in the neonatal intensive care unit at Children’s, but he was doing very well and didn’t have any of the complications — underdeveloped lungs, genetic issues, cardiac complications and more — that babies with omphalocele can have. The current best practice in treatment for omphalocele is to delay surgery for several months if possible, which gives the abdomen time to grow before the organs are placed there.

Jack was cleared to go home for the months before his surgery, but there were challenges for Sara and Wes. One was learning how to dress and care for his omphalocele to prevent infection. The other was finding a way to transport Jack safely, even with a condition that prevented him from using a traditional car seat.

That’s where the Children’s Car Seat Clinic came in. Car seats designed for children with complex medical needs are expensive, and insurance usually does not cover their cost. Our clinic, supported by donors, helps families access and use these seats correctly. The seats are often loaned to families if they are for short-term use, but they are also provided for families as needed.

When Jack was discharged, the Car Seat Clinic team provided a special seat called a car bed and taught Sara and Wes how to install and use it. A few weeks later, the family returned to Children’s to find that the staff had ordered a Jefferson seat, which is specially designed for babies with omphalocele, to use free of charge until it was no longer needed. The Jefferson seat allowed Jack to ride upright rather than lying flat, which was much more comfortable for him.

“What an amazing resource we have here in Wisconsin — one of the best in the country,” Sara said. “Everyone has just been amazing and so helpful. I was surprised to learn about the car seat resources right here at Children’s and even more surprised when they ordered us the special seat!”

 
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