Spina Bifida: What a Difference a Year Can Make

This mom’s account of the journey she’s traveled since doctors diagnosed her son with spina bifida is an inspiration to all parents and a credit to modern medicine.

By Johnna Kerres, patient, Texas Children’s Hospital

Early last year I was taking a pregnancy test. Today, I am the mother of a healthy little boy who loves to smile and kicks his legs like crazy. The latter part of that sentence may not sound all that special to some. However, to a mother who was told her son would never walk, every stretch and toe wiggle is a miracle.

In fact, everything about my pregnancy was a small miracle. My son was diagnosed with spina bifida 18 weeks into my pregnancy, and by week 24 we were in Houston receiving in-utero fetoscopic surgery. I am happy to report things have gone better than I ever could have imagined.

At 39 weeks and 1 day, Everett John Kerres came into the world at 5:01 pm, weighing 6 lbs. and 7 oz. He was 19 inches long and absolutely perfect! I was even able to have a vaginal delivery, which is one of the many reasons why I wanted to have fetoscopic surgery at Texas Children’s Fetal Center®.

Even though my delivery had some ups and downs, overall I could not have asked for a better birthing experience. I decided to go to the hospital on Sunday evening because I thought I was leaking amniotic fluid. However, after being checked by a doctor, it turned out I was only dilated to a two and wasn’t leaking fluid at all. I was going to be sent home when Everett’s heart rate suddenly dropped for several minutes. I was given oxygen and an IV and told I would have to stay put, just in case.

Over the course of the next 24 hours, his heart rate dropped again, and I was induced. On Tuesday, September 20, doctors broke my water around 11:30 am, and I labored on a birthing ball for several hours before getting an epidural. Ten minutes after I got the epidural, it was time to push. Everett is my first baby, and I didn’t really know what to expect. It was so reassuring to be surrounded by the doctors who performed my surgery and had been seeing me week after week at Texas Children’s Pavilion for Women. I think I inherited my mother’s “quick labor gene,” because Everett made his grand entrance after only 15 minutes of pushing!

It’s hard to put into words what that moment felt like. As the doctors were holding him up, he shifted his deep blue eyes and looked right into mine. My heart might as well have exploded. I felt so much love.

Everett spent one week in the NICU, and that was the hardest part of the entire process for me. Having to leave my baby at night so I could pump and get some sleep was heartbreaking. It felt very unnatural, but the NICU nurses were amazing and helped ease some of my anxiety. I know that we are blessed his stay was so short.

Once he was given a clean bill of health, my little man boarded his first flight at only 8 days old. It was my 29th birthday, and bringing him home after four long months is the best present I have ever received.

During our initial diagnosis, we were given a very bleak outlook. But since coming home, Everett has been thriving! He has not needed a shunt and has full movement of his legs. He has been hitting all of his milestones and is even advanced for his age in the areas of neck and core strength. His right foot is clubbed, but treatment has been going very well. He looks pretty adorable in his special shoes, too! We recently started catheterizing him every four hours to help drain his bladder, and that has become second nature. At first it seemed scary, but now it’s just an extra step during diaper changes. When I think about the challenges he could be facing, it’s such a minor thing.

While it is still unknown exactly what obstacles Everett will face, I am constantly reminded what a miracle he is and how far medicine has come.

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