My turn

October is Spina Bifida Awareness Month

2013-10-06T00:00:00Z October is Spina Bifida Awareness MonthCarrie Steinweg Times Columnist nwitimes.com
October 06, 2013 12:00 am  • 

Fourteen years ago when I was pregnant with my second son, I took one of the routine tests that is supposed to screen for potential birth defects. I expected that it would be another routine test and there was no cause for worry.

So, I was shocked when the doctor’s office called to say the results weren’t normal. The results showed a high probability the baby would be born with spina bifida. She recommended further testing, an amniocentesis, which is a procedure that has risks that include pre-term labor, respiratory distress and fetal trauma. The alternative was an intense high-tech ultrasound, which could be used to get more information. I opted for the less invasive ultrasound.

When it was done, I was told there didn’t appear to be any abnormalities and they were very optimistic the baby would be born completely healthy, but they were unable to rule it out completely. I wouldn’t really know for sure until the baby was born.

Until then I really had no knowledge of spina bifida and had never known anyone who had been born with it. I spent the rest of my pregnancy with it in the back of my mind and the slim possibility I would have a child born with that condition.

Our little guy arrived showing no signs of any birth defects, but he just didn’t seem to want to make his entrance an easy one. He arrived three weeks early via emergency C-section and then spent several days in special care, but I finally knew he did not have spina bifida.

A couple of years ago, my sister was having a birthday party for her kids and an old neighbor and childhood classmate from our hometown of Dolton was there. His name is Kevin Tamosaitis and he and his family now live near Indianapolis. With him was his lovely wife, Becky, and their two amazing kids, Sierra and Braden. I left that day so inspired by Braden, who is about the same age as my youngest, who is now 8 years old and in third grade.

Braden was born with spina bifida and he just has this outgoing, spunky personality that I adored. He spent part of the time in his wheelchair when we were outside and part of the time moving around on the floor and playing with the other kids and pulling himself up on the furniture. Nothing stopped him from doing everything the other kids were doing. He had a perpetual smile on his face and was full of energy.

I haven’t seen Braden since that initial meeting, but I keep up with him and his parents on Facebook and I just feel a connection to his family after my pregnancy experience. I follow along to see when he is attending special events as the 2013 Indiana Children’s Miracle Network Hospital Champion or undergoing another procedure at Riley Hospital for Children. Right now his face is on billboards all around Indianapolis and other parts of the state to promote the Children’s Miracle Network Hospitals and he appeared in a recent commercial for Riley Hospital and Speedway.

Braden was the second in his family born with spina bifida and his family started a charity called Nathan’s Playroom in honor of the son they lost as a baby due to the disorder at six weeks of age. When Becky was later pregnant with Braden, they learned he would also be born with spina fifida and doctors prepared for the probability the outcome may be the same. However, Braden is a quite a fighter and has surpassed the expectations doctors had for him. The family continues Nathan’s Playroom, a nonprofit organization that provides toys and other comfort items to siblings of kids undergoing procedures at the hospital and it has now expanded to a Ronald McDonald House in that area.

The reason for me sharing this story is that October is Spina Bifida Awareness Month and I encourage you to visit spinabifidaassociation.org and learn more about this condition and read some inspiring stories from families like Braden’s. I also invite you to visit nathansplayroom.org to learn more about Braden’s story and learn how to donate to the cause.

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