Kumaka :: Child with Spina Bifida

We found out that our precious son would have Spina Bifida at 19 weeks. We went to that ultrasound to find out the gender of our baby, and we got a whole lot more than we bargained for. We were told our "options" multiple times, until we were more sick about the word termination than the diagnosis. We struggled with finding the understanding of the enormity of what we would be facing. It was so overwhelming. But once he was born, he was perfect in our eyes. He's had quite a few challenges and hurdles to jump over. He's had multiple surgeries, mostly on his feet which are proving to be quite difficult to correct. He is a full time crazy wheelchair boy, but is learning to walk with RGO's. At the moment he is in a spica cast because both of his hips were out of socket and he had bilateral hip surgery to fix that. He's had heel cord lengthening multiple times, as well as a couple of bony procedures on his feet. He has battled pneumonia, and multiple UTI's.


But his sweet spirit, his courageous attitude makes him a warrior. He does not really think he's different. He's five right now and has only once mentioned the fact that he can't walk. He has four brothers who shower attention on him, and he really is a part of the crew. Their friends adore him....and love him and play with him. He is so very awesome.....he amazes me every single day.


He is a huge blessing in our lives and we wouldn't change a thing about him. Our only wish is that he didn't have to go through quite so much...but really that is what makes Kumaka who he is. His full name is Kumakalehua...which is Hawaiian. It means "the Strength or Foundation of the home". He is that for us. We love him more than anything.

Check out their family blog at http://fromamomofboys.blogspot.com/

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Grayson :: Child with Spina Bifida

Grayson is 18 months old and has the brightest blue eyes ever! He was blessed to get his daddy's beautiful blue eyes.


Grayson was born with Spina Bifida at L5-S1, but that has never stopped him! He came out fiesty! Before I was even able to get to the NICU to see him, he was already showing the world his fighting personality. He kept trying to roll off his stomach and the nurses said he almost kicked himself over twice! He was so strong, able to lift his head and toss it from side to side. I remember being absolutely amazed when I got to spend a few minutes with him before being wheeled to my room to recover. After surgery they actually had to sedate him more because he kept pulling his iv's out and trying to roll off his stomach again. And he hasn't slowed down since!


To date Grayson hasn't missed a single milestone! Take that Spina Bifida! He rolled at 3 months, sat on his own at 6 months, began 4 point crawling at 9 months, pulling to stand at 10 months, cruising at 11 months, and began taking his first steps with a walker at 12 months. Then at 16 months he took his first independent step and at 17 months he could walk 5-10 feet independently. Now he's 18 months and can walk 10 feet smoothly and even return to standing on his own when he falls. Grayson wears afos because he has very little movement or muscles below the knees. Spina Bifida may be a part of him, but it most definitely does not define him!


Grayson is the most sweet-natured boy I've ever met. He loves giving hugs and kisses, even is a great snuggle bug when he's trying to get out of doing something (usually pt or bedtime). Grayson loves trucks, dinosaurs, and any kind of animal. He loves making animal sounds and can tell you what just about every farm animal says. A truck can't drive by us without him signing the sign for car and saying VROOM! Bath time is his favorite time of day. Just opening the bathroom door gets him all excited and he quickly goes to the bathroom squealing with joy. He loves reading books and climbing anything and everything. Grayson loves going to the park, the slide and the swings are his favorite. He's bit of a dare devil because he loves the big slides that make him go really fast or the curved ones. On the swings he loves being pushed really high, makes me a little nervous but he LOVES it. Grayson's favorite word right now is uh-oh. He says it all the time. He purposely throws things down just so he can say, "Uh-oh"! It's super cute! Grayson has the greatest belly laugh ever. I get so tickled when he finds something super funny. This week it was an Elmo beanie baby that kept falling over every time I sat him up. He got so tickled at this and it was absolutely adorable! I honestly can't believe how lucky we are to have been blessed with him!

my blog is: littlegjourney.blogspot.com

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Thank you for sharing Grayson's story Melisa! We still need more stories, click here to share yours!

Connor :: Child with Spina Bifida

Connor Sternberg is a 9 year boy from Bethlehem Twp. PA with a spina bifida lesion located at the L4-L5 level. He and his mom were fortunate and blessed to qualify for experimental fetal surgery for spina bifida. Connor's surgery took place on February 13, 2003 at the Children's Hospital of Philadelphia and was performed by Dr. Adzick and Dr. Sutton's team. Connor was the team's 57th patient and his procedure took place a few days prior to the start of the National Institute of Health's randomized MOMS study.

Because of the experimental nature of the study at that time, Connor's mom was required to live near the hospital on mandatory bed rest for the remaining three months of her pregnancy. This time was made a little easier thanks to the welcoming people at the Philadelphia Ronald McDonald House, the very first house of its kind. Connor was delivered at 37 weeks.

Today, Connor enjoys many activities including soccer, dancing, acting and Cub Scouts. Connor has a slight amount of paralysis on the bottom of one foot and some weakness in the other, but physical therapy in his younger years has helped him figure out how to balance himself well. He occasionally wears ankle-foot orthotics (AFOs) for extra support of his ankles and feet when he has to do a lot of walking. Connor's public school discontinued his physical therapy sessions when he was in first grade.

God has blessed Connor with a huge personality, and the doctors at CHOP have helped give him the opportunity to dance, play soccer and enjoy an active life with friends and three older brothers. Fetal surgery also gave our family a chance to do something proactive for our child. We hope some day this could be the first option presented to parents that get Connor's diagnosis, rather than being encouraged to discontinue a pregnancy. Fetal surgery may not be right for everyone, but our hope is that after learning the real, potential benefits of the procedure, many more kids will get the opportunities Connor has had... just to experience life.

Here's a local PBS-TV story that was done about Connor in 2011:

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Thank you for sharing Connor's story Frank! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at) spinabifidastories.com!