Living through the uncertainties of spina bifida

Written by Amanda Kern

Nearly two years ago, I shared my son Chance's story, as I wrote about . At that time, our son was only eight months old, had endured 11 surgeries, and spent more than a month of his life in the hospital. Looking back, it was a time filled with uncertainty and fear, as we began to wonder if the medical moments would ever settle down. After the amazing out pour of love and support in sharing his story since birth, I wanted to take time to share an update, as our family is continuing to learn to overcome the challenges of raising a child with spina bifida. In addition to living with spina bifida, Chance was born with hydrocephalus and a chiari malformation, and it only seems appropriate that we share this most recent update to bring awareness to all three medical conditions that our son's life has been impacted by.

Spina bifida is a neural tube defect, a birth defect, where a baby's spine never fully forms in the first 28 days after conception. Babies, like our son Chance, with spina bifida are born with an opening in their back that requires surgery in the first few hours after birth. There is currently no cure for spina bifida. Though the defect is repaired after birth, most individuals with spina bifida are affected by mobility challenges, bowel and bladder issues, orthopedic concerns, and more. Due to this defect, individuals with spina bifida also develop hydrocephalus (fluid built up on the brain), and approximately 80-90% require a shunt to drain the fluid to help prevent brain damage. Many of Chance's surgeries were a result of his shunt malfunctioning, given a shunt's 50% failure rate. In addition, a spina bifida defect causes a chiari malformation in the brain, where the brain is pulled down into the brain stem and if serious enough, complications can cause gagging, vomiting, issues swallowing and breathing, as well as upper mobility issues.

Approximately eight babies are born with spina bifida every day, and there are currently more than 166,000 Americans affected by spina bifida. In central Florida, we are among hundreds of families affected by spina bifida. It's the most common, permanently disabling birth defect, yet there are still so many who know very little about it. Our family hopes that by sharing this update, it will help create awareness and support to those living with spina bifida.

Before Chance’s 11th surgery, we spent ten days in the hospital. During that time, we were reminded of just how incredible the medical team at Arnold Palmer Hospital has been to our baby boy. Our little guy has been loved long before he was born by many of the doctors and nurses that now care for him. In the most trying moments, they've always been there to help remind us we are not alone on this journey.

One thing we've learned since Chance was born is that he's a strong little guy who has a resilient spirit. No matter how much adversity has been brought into his life, he's found a way to remind us that he won't allow spina bifida define him.

We have always said that shortly after he was born, he was so strong that we thought he might have super powers. And so we nicknamed him "Super Chance.” He's lived up to that nickname, and in the past two years, our family has helped raise well over ten thousand dollars to support our local spina bifida chapter.

Instead of thinking about how much spina bifida has impacted our lives, we've instead found ways to appreciate every moment with our family. Our kids absolutely adore Chance, and after seeing how much he went through during his first year of life, they too value every moment we have with him.

Every six months, Chance is seen at the spina bifida clinic at Arnold Palmer Hospital. During this time, he goes through a series of tests at the hospital to check on his neurological, urological and orthopedic health. Shortly after the tests are performed, we meet with the nurses and doctors at the clinic to discuss Chance's health and progress.

This clinic is so important to our family and the hundreds of other children affected by spina bifida in central Florida. Without the clinic, we would have to visit all of these specialists separately, complicating our schedules even more. We're incredibly appreciative of the nurses and doctors who work together as a team to ensure that our kids are receiving the best possible care. The medical challenges that children with spina bifida face are so intertwined, that it's valuable to have a team of doctors who continually communicate with one another in regards to all aspects of their health.

Our daughter is now inspired to become a doctor one day. She even claims that she wants to be a neurosurgeon, because she hopes to help other kids with spina bifida. Not only are the doctors caring for our baby boy – they are inspiring our other kids because of the care they are providing to our son.

As a photographer, I've shared many of Chance’s photos with the spina bifida clinic and his doctors, with the hopes that sharing these photos may somehow bring hope to other families, and help remind them that children with spina bifida are just as beautiful as any other child.

When we visit the clinic for his appointments, it's always fun to see Chance recognize his baby photos. It's a reflective moment for us, as we see just how much he's grown.

Over the past two years, our family has managed to resume a sense of normalcy most days. Before our son was born, we feared so many things, including how much we as a family might not be able to do, and how much his medical challenges might limit us. I remember worrying about how much we would enjoy traveling or taking trips to places like the beach, while caring for a child with such significant medical needs.

Due to his spina bifida, we anticipated that he would have some mobility delays. Many children with spina bifida are permanently disabled and unable to walk, and for those that can walk, most require the assistance of braces, walkers, or other assistive devices.

About two months after Chance's 11th surgery, we started physical therapy at Arnold Palmer Hospital to help with Chance’s physical development and mobility delays.

After two months of therapy he began to sit unassisted.

A few months later, he was able to stand on his own leaning against something.

About a year after his 11th surgery, he began to learn to take steps with the assistance of a walker. Because of his spina bifida, his legs are weaker than normal. He requires braces to support his ankles and lower portion of his legs, and still shows some instability with his knees and hips. His walker has helped support him just enough to take steps on his own. We have faith that he is going to be able to do as much as those little legs of his will allow him to do.

We've been amazed by his progress this year. He's showing the desire to now stand on his own. Chance has been able to stand without any support for a split second before losing his stability.

Among the things I feared that Chance may not be able to do, I wondered if he'd be able to participate in infant survival swim lessons like my other two children. I knew how good swimming is for physical health, and so we went through the medical approval process to enroll him in lessons. He didn't just successfully complete the lessons. He did amazing. Each time we put him in lessons, he would make huge progress with his mobility to crawl, stand and take steps.

He loved the water so much, that this summer we spent some of our time in aquatic therapy at Arnold Palmer Hospital. His therapist worked closely with him to help him gain core strength, which has been a positive influence on his mobility.

Earlier this year, we found ourselves saying, "take that spina bifida" because we know that taking steps independently, even with the assistance of a walker, is something that not all children with spina bifida are able to do.

Chance finds ways to humor us through these moments. In the first few months with his walker, he gradually gained confidence and is beginning to let go with one hand, and even acts silly by dancing.

As we've been overjoyed to see his progress with mobility, we have taken him out with our family often. However, doing something as simple as taking a stroll through the woods has left us wondering how on earth he'd be able to have the same experience independently as he gets older.

A few weeks ago, Chance was admitted to Arnold Palmer Hospital to undergo his 12th surgery, a chiari decompression surgery. Chance made sure we knew that once again, this surgery wasn't that big of a deal to him. At 2 ½ years old, no child should have to go through this many medical surgeries.

For kids with spina bifida, a chiari decompression surgery is only recommended for those who really need it. We were forewarned it would be something that would benefit him, but that it was a much more painful surgery than others he had been through, and that he'd require several days in the hospital to recover.

No matter how many surgeries he's been through, it's never easy knowing your child will go through surgery. I recall feeling heavy hearted in the moments before they took him back of surgery. I was fearing the risks and praying that he'd stay strong and make it safely through another surgery.

By the end of his first full day in the hospital, he began to act as if he had never even had the surgery. He danced, using mostly his upper body and head, from his crib. We shared a video with his doctor and she agreed that it looked like he was just about ready to go home. The very next morning he was discharged.

We have faith that his true super powers aren't just in his recovery and strength. In sharing his story, we realize that he has the power to impact so many other lives. We are helping to create awareness of spina bifida, and also helping families who are just beginning this journey. As we shared updates through his most recent surgery, we were contacted by so many families who prayed for our baby boy and told us he was part of what gave their family hope after learning their baby would be born with spina bifida.

It’s still not easy accepting that our baby boy was born with a birth defect that will require a lifetime of care. But, we are reassured that through the challenges that lie ahead, he has some of the most amazing medical professionals caring for him. As we spend so much time appreciating our moments with him, we want to thank all of the wonderful people we've crossed paths with at the hospital who have helped care for our baby boy. I speak for not only our family, but other families in central Florida too, as we truly value the care our children with spina bifida receive. We couldn't imagine living this journey of caring for a child with spina bifida without so many of you caring for our kids.

Amanda Kern is a mother, wife, educator, photographer, mentor and writer. She teaches graphic design at Valencia College, and is also photographer who specializes in newborn and portrait photography. Thanks to her photography, she’s been able to volunteer to help local families and organizations such as Now I Lay Me Down to Sleep, Help-Portrait, Inspiration through Art and the Spina Bifida Association. Through her blog she shares her experiences as an educator, photographer, and mother.