About Ezra and Spina Bifida

Sept 7th, 2010, Ezra’s ultrasound. We couldn’t wait to find out if we were having a boy or a girl. We were so excited when it was another boy. Later that night we receive a phone call to tell us our son has Spina Bifida. Uh…what?!?! This led to a pregnancy of ultrasounds, doctor appointments and finding out everything we possibly could about what Spina Bifida Myelomeningocele was and what this might mean for our son.

Fast forward to January 4th. The day Ezra would join this world and we would have an idea of what was unknown during pregnancy. At 8:13AM Ezra was born 5 pounds 8 ounces. The next day he had his closure surgery. The Neurosurgeon and Plastic Surgeon told us his closure was one of the hardest they have ever had to do. Not something as parents you want to hear about your son. The way Ezra’s spine had developed his plastic surgeon had to stretch the skin and pull it over the opening like pulling purse strings closed. Also it would take about 6 to 8 weeks to heal. Which meant that we would be in the NICU for 6 to 8 weeks! We were not expecting to stay in the hospital that long. We just wanted to go home. To be a family without all these other people around.

The NICU was slow, but every day or so something would get better. An IV out, a tube gone, another beep disconnected. etc… It felt like forever, but Ezra was getting there. At 3 weeks old the Neurosurgeon decided Ezra’s hydrocephalous was not improving and he needed a shunt. We knew it was coming and we knew it would help Ezra and keep him alive. So even though it was hard to have your 3 week old have another surgery we were thankful that it would save his life.

The next few weeks felt like forever just sitting around with Ezra waiting for his back to heal enough so we could go home. Finally after a long emotional 6 weeks, the Plastic Surgeon said we can go home. Yay! So we got our final test done and got to leave that place. Before we left, Ezra had a VCUG and found his bladder was fine for now, and Ortho checked his hips and although they were shallow, but nothing needed to be done. We could go home. After 46 long days, we get to go home. Ezra’s back was still healing, so we had to stop every 30 mins to give Ezra’s back a break from the car seat, and get some blood flow to it. But 4 hours later we were home!

The next few months we had doctors appointments and more doctor appointments. We needed to make sure his shunt was working well, which it is. We also have to follow up with all the other doctors to make sure Ezra works as well as he can.

We currently work with PT and we have more doctor appointments but right now we have the normal stresses of a child at home with a few extra things. We are looking forward to getting a wheelchair for Ezra. Even though we know he can’t walk we look forward to the independence he will develop from getting his chair.

Ezra continues to get stronger and show us his fun personality. It is a joy to meet parents with children similar to Ezra. There are so many different aspects to kids with Spina Bifida so finding something in common has been so helpful.

Ezra at 13 months old

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