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Redefining "spina bifida" through the lens of a camera, one photo at a time

October 25, 2013

Written by Amanda Kern

October is spina bifida awareness month, and in central Florida, many of our families affected by spina bifida are working on finding ways to help redefine spina bifida. Most people know very little about spina bifida, even though it is the most common, permanently disabling birth defect.

Just over three years ago, my life was changed when I received the diagnosis that our baby boy would be born with spina bifida. Some time in the first 28 days after conception his spine didn't fully form. He was born with an opening in his spine that required surgery when he was only four hours old. He's since endured a total of 12 surgeries, and has spent more than a month of his life in the hospital. I have to admit; three years ago, our family was frightened to learn all of the complications that could happen with a child born with spina bifida. So much so that we nearly gave up on his life, but instead, we decided to give him a "chance.”

Over the past three years, my son Chance has inspired me in ways I never imagined possible, something all parents of a child with spina bifida might say about their child. As a photographer, I found myself documenting his life and learning that he was born perfectly made, despite the imperfections we once feared.

Over the past three years, my son's story has inspired many, and I've come to meet so many other families affected by spina bifida. In 2011, I began to photograph other children born with spina bifida in hopes of creating awareness and supporting our local spina bifida community. I hope that by sharing some information about spina bifida, along with some of the images captured over the past three years, that I might be able to further redefine spina bifida. Hopefully, this may help you learn a bit more about this birth defect that affects hundreds of families in central Florida, and more than 166,000 Americans.

Most individuals born with spina bifida face mobility challenges. Usually, the severity of mobility loss is based on the location of the child’s lesion on their spine, how large it is, and how many nerves it may have impacted. Spina bifida is often referred to as a “snowflake condition,” meaning that no two individuals will ever be impacted identically.

Many parents fear that their children born with spina bifida may never walk, and it's true that some are born paralyzed due to their birth defect. But, just because someone has spina bifida, does not mean they will never walk.

Many children born with spina bifida require braces, walkers, or a wheelchair for mobility.

Most children born with spina bifida also require regular physical therapy to help build the strength in their lower extremities.

Sometimes, living with spina bifida is part of what makes them more determined individuals. All of the challenges they might experience with their mobility won't keep them from living a great life.

Those who are able to take steps without support certainly learn to appreciate every single step. Spina bifida is a complex birth defect, and though a person may have mobility early in life, more complicated surgeries may be required on the spine, which may further impact their mobility.

Most will tell you that children with spina bifida are some of the most fearless children you'll meet.

These kids are also some of the bravest kids you'll ever meet. Some children only require one or two surgeries when they are first born, and others end up needing many more surgeries and spending countless nights in the hospital.

Children with spina bifida are blessed with families who provide the most unconditional love for their children. All of the medical moments along the way can be trying, but sometimes it helps remind us of what's most important in life, and helps bring us closer to one another.

It's easy to fear how having a child with spina bifida might impact a family. However, children with spina bifida are known to have some of the most loving, protective, and dedicated siblings.

We're reminded that the joy within a child with spina bifida is often what gives us the strength to get through the trials that come with living with spina bifida. One thing is for sure; children with spina bifida are just as beautiful as any other child.

Some may question the quality of life of a person living with spina bifida. Children born with spina bifida often go on to lead amazing lives, and hold careers as doctors, teachers, nurses, musicians, and writers.

Many born with spina bifida are also among the most ambitious and adventurous individuals you'll meet.

Some children born with spina bifida are known to experience learning challenges, but don't be surprised if they are some of the most curious and brilliant minds.

Children born with spina bifida are also some of the happiest kids. Regardless of how many medical moments they may endure, they are almost always found smiling.

I've given you so many hopeful things that help you realize these kids really are amazing, right? They really truly are.

It's much easier to create optimism once you've had, or come to know a child with spina bifida. But when a parent is expecting a child with spina bifida, it's one of the most heartbreaking diagnosis a person can receive. Some say having a baby with spina bifida is like winning the lottery, but the type no one wants to win. Most parents only dream of having a perfectly healthy baby. No one ever dreams of having a child with spina bifida. Along with the diagnosis brings instant fear of what may be "wrong" with their baby. In fact, many doctors warn their patients at the time of diagnosis not to google “spina bifida” because to see the variety of imperfections a baby with spina bifida might be born with is quite scary.

But, just because a baby is born with a birth defect doesn't mean they won't still lead an amazing life. Yes, it's true – they may require additional care. A recent Spina Bifida Association Insight's magazine reported that children born with spina bifida have thirteen times greater medical expenses than the average child. In addition to mobility and learning challenges, individuals born with spina bifida are often born with bladder and bowel challenges, curvature of the spine or scoliosis, and some experience osteoporosis later in life. Most children with spina bifida are also born with hydrocephalus (water built up around the brain), and approximately 80-90% will rely on a shunt to help drain the fluid from the brain to help prevent brain damage. The device helps save lives, but it comes with a 50% failure rate, so some kids require multiple shunt revisions over the course of their lifetime. Unfortunately, spina bifida has no cure. A person born with this birth defect will endure the complications of living with it for their entire life.

Some babies born with spina bifida are also born with clubfeet, causing their feet to turn inward. It's not uncommon for these children to require additional surgeries and casting of their feet and legs to correct the defect. Some children who do not have feeling or mobility in areas of their legs may also experience fractures of their feet or legs as they grow and become more active. Most children are seen routinely each year by a half dozen specialists to monitor their health care.

Approximately 60 million women are at risk of having a child with spina bifida. It's believed that folic acid could help prevent this birth defect 70% of the time. Because more than 50% of pregnancies are unplanned, it's important that all women of childbearing age take folic acid. However, many women do take folic acid for months or years prior to pregnancy, and still have a child with spina bifida. The exact cause of spina bifida is unknown, but it's believed that there may be environmental and genetic factors that could contribute to the occurrence of spina bifida. There's less than a 1% chance of having a baby with spina bifida. There are approximately only 1,500 babies born with spina bifda each year.

Though we hope to help create awareness to prevent spina bifida from occurring in other families, we still want to encourage you to help embrace those who are born with spina bifida. The next time you learn someone was born with spina bifida, don't ask "what's wrong" with the person – instead, try to recognize that they are just as amazing as any other person.

In the past three years, our families in central Florida have come together stronger than ever before to support our local spina bifida community and to help redefine others’ perception of spina bifida. We've come to realize that the birth defect we once all feared is the one thing that has helped bring us closer together, and now we all feel a little more united by spina bifida. If you'd like to help support our local spina bifida community, we encourage you to visit the Spina Bifida Association of Central Florida's web site to learn more about spina bifida.

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.