Living through the uncertainties of Spina Bifida

Written by Amanda Kern.

Just over a year ago I had never heard of a neural tube defect or spina bifida. In fact, a year ago I would have told you both things had to have been one of the most horrible things to learn your baby had. Spina bifida is a birth defect that seemingly makes you feel as though something so terrible is wrong with your baby.

Spina bifida occurs in about one out of every 1,500 babies. In the first 28 days after conception a baby's neural tube does not fully form causing there to be an opening in the baby's spine to be present at birth.

Last fall, my son Chance was diagnosed with spina bifida when I was 17 weeks pregnant. Everything seemed to be going well until the day I received a call from my doctor when we learned some prenatal tests returned and were a little higher than normal causing some concerns that my baby might have a neural tube defect. The very next day I underwent an ultrasound and was told I was expecting a baby who had spina bifida. I learned there was no cure and that a lot of what we had to expect for our unborn child would be uncertain until he was born. We learned our baby would likely require surgeries and that his medical care could potentially be extensive. We were told it was like winning the lottery – but the type no one wants to win.

When we first learned about spina bifida we seemed to only learn about all the things that could go wrong. And about all the things we feared and never wanted our baby boy to go through. That he might never walk. That he might have problems with his bladder & bowels. That he might face learning challenges. It seemed so incredibly terrible but somehow we held onto hope and thanks to the support of our doctors and Chance's neurosurgeon we found the optimism he still had ahead and decided it was best to give him a "chance" to help us see just how amazing he was.

When Chance was born in February this year we felt prepared. We had several months to learn about spina bifida and knew many of the possibilities of what might happen. We knew he'd spend some time in the NICU. We knew he'd have surgery to repair the opening in his back when he was just a few hours old. It was tough seeing him go through so much but he still seemed just as perfect as any other baby. Chance spent the first 18 days of his life in the NICU laying on his tummy while his back healed.

It wasn't easy leaving our baby boy behind in the NICU for so long. We visited often. Being a photographer I found photographing my baby boy to be a great way of coping. I've been sharing his story on my blog along with my photography since long before he was born. Somehow it's helped me through the challenges my son has faced.

While in the NICU Chance was checked on regularly by the neurosurgeons who ensured his back was healing well.

Spina bifida patients are known to develop hydrocephalus (additional fluid around the brain). This extra fluid puts pressure on the brain and could cause damage and even be life threatening if not treated. About 90% of spina bifida patients require a shunt to help drain the fluid in their head to their belly. When Chance was just a week old he had a surgery to have a shunt placed in his head because he had developed hydrocephalus. He now relies on this device to survive.

After the first three weeks of his life Chance ended up escaping the NICU and Arnold Palmer having four surgeries in order to repair his back and place his shunt. We arrived home and once we settled into caring for our baby boy after his surgeries we came to realize that he was a lot like any other baby. As a newborn photographer, I became obsessed with photographing his perfectly sweet little face. He was just as dreamy as any other newborn and I fell in love with the beauty of this child of mine who was born with spina bifida.

Since before Chance was born I prayed and prayed that he wouldn't need to have surgery ever. But I accepted that he'd likely at least have to have the one required to repair his back. I had hoped that would be it. Spina bifida can affect all patients differently so we knew that what we had to expect moments ahead would be uncertain. By the end of July we found ourselves back in the hospital with Chance after his shunt had malfunctioned. Not just once, but three times in a matter of three days. I had a fussy baby boy on my hands and all I could do was be there for him as I saw how much a faulty shunt affected him.

Shunts are said to malfunction 50% of the time. Some patients get one and never need a revision. Others get one and end up with many revisions before one sticks and works properly as it should for a long period of time. Chance's shunt has left me fearful and unsure of when he's having typical baby fussy moments and when I should be truly worried that something is going wrong. Thankfully his neurosurgeon was always just a call away and reminded me to trust my motherly intuition which has virtually always been right.

Along the way Chance has underwent countless tests to help his doctors better understand what's going on with his shunt. I keep joking with his neurosurgeon that he's just making excuses for us to come back and visit her because he adores her that much. Many of his doctors have become a lot like family this past year. We've definitely seen them a lot more than our own family and there's no doubt just how much they all care for our baby boy. With as tough as it's been to watch him go through so much we feel reassured to know he has people who truly care for him doing their best to make sure he's going to be okay.

By the end of July Chance had underwent his 8th surgery. Surgery #8 was one of the toughest for us. Having three surgeries three day s in a row made him seem so weak. We did all we knew to do and offered our embrace and the comfort needed to help him recover.

It didn't take long for our baby boy to recover. He's resilient and has such a sweet spirit. Our two older children joke that he's "super Chance" and after seeing how much he's went through this year we believe he very well may have super powers.

On September 23rd Chance had another shunt malfunction and his 9th surgery. Now when we enter the hospital many of the doctors, nurses, and staff recognize us and say, "no, not you again."

Just a few days after getting out of the hospital Chance's shunt malfunctioned again and we learned he had to have a 10th surgery. After a while the experiences begin to feel a little surreal and leave us wondering, "is this really happening, again?" Watching our baby boy go through so much has been overwhelming for our family.

We learned that Chance's shunt continues to malfunction because its been clogged. When blood enters the fluid in his head that is being drained it clogs the small holes in the catheter of the shunt. Once they're clogged it doesn't work properly causing it to malfunction.

After a while it seems as though Arnold Palmer Hospital has almost become like a home away from home for my baby boy. Our two older children love to visit when he gets admitted into the hospital.

After his 10th surgery Chance had to remain in the hospital for a week and a half. Due to some concerns his head needed a bit of time to heal so they've set up a device to drain the fluid externally until his head is well enough to try to put in another shunt. It's been a tough year seeing this little guy go through so much. He's spent more than a month of his life in the hospital. Our family does all we know to do when he ends up back in the hospital...we surround him with our love.

A year ago I was scared to watch my baby boy go through so much. I didn't know how I or my family would ever make it through all the things I read might happen to a child with spina bifida. Back then I remember praying none of those things would happen to us. Now I am living through many of those moments I feared. I've learned to stop asking how and just take the moments one day at a time. I never wanted to spend this much time in the hospital caring for my child but it's okay...because he's going to be okay.

Even after all the surgeries he's been through Chance continues to humor us all. As we all try to take the situation seriously he loves to do silly things. Here's one of his latest tricks that has been known to make a room full of doctors laugh.

Nearly eight months old and this kid has proven he's tough. You'd think he'd be a bit more cranky. He has his moments where he's a little more fussy but most times his face lights up with the most adorable smile. Just ask his nurses...they all have come to adore him.

My baby boy is quite special to have so many people praying for him...even his doctors. I'm not sure how our baby boy would have made it through so much without such amazing doctors helping care for him. There's no doubt that my baby boy has grown on them all.

A little over two weeks ago Chance had his 11th surgery. We'll just have to pray it's the last. We realize with Chance having spina bifida a lot of things ahead might continue to be uncertain but that's okay because we feel fortunate having him here. Every time I see this smile, whether or not we're in the hospital, I feel blessed. I definitely won the lottery having this kid in my life—he amazes me a little more every day.