Thursday, May 17, 2012

Autumn :: Child with Spina Bifida

Autumn was diagnosed with Spina Bifida when I was 20 weeks pregnant. Her level is L4-L5, she has a VP shunt, Arnold Chiari II Malformation, central apnea, tracheotomy, and a gastro-button. I am actually nervous to share Autumn's story to new parents learning their child has SB because of all the "complications" that come with her story.

She's in the rare 5% that has severe ACll issues. We did not know this until after her birth. We figured we would have the typical hospital stay with her back closure & shunt & then home to do all the things that come along with SB like cathing, therapy, etc. During her first week of life she would stop breathing & we learned she would need a trach & ventilator to keep her alive & get her home. After a 4 month hosptal stay, she was finally able to come home. Even though my fears of the "worst case scenerio" came true they aren't what I expected. I have a 3 year old who can not walk or talk, can't eat by mouth, needs a breathing machine to keep her alive while she sleeps, & is developmentally like a 12 month old. This may sound sad or depressing but it's the COMPLETE opposite. She may do things differently than the average child but she finds a way to communicate to us without words and seems more "normal" than not. Autumn can army crawl all over the place, he uses her wheelchair to get into things and pop wheelies. She LOVES to watch TV & look through books. My daughter is my hero. She's my inspiration. She has spunk personality. She is strong-willed & stubborn just like her momma. She is the HAPPIEST little girl & you will rarely EVER see her cry. My worst fears about SB turned out to be my greatest blessing. Autumn's life is proof that the worst case scenerios drs give turns out to be not so bad afterall. ;)

To read more about Autumn, visit their family blog at

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Monday, May 14, 2012

Michelle :: Adult with Spina Bifida

I was born with Myelomeningocele (L4/L5) and hydrocephalus on April 3, 1971. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or due to untreated hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

Thank you for sharing your story, Michelle! We still need more stories, click here to share yours!

Wednesday, May 9, 2012

Hayden :: Teenager with Spina Bifida

Hayden (age 17) enjoys participating in numerous recreational activities including sledge hockey, hunting, and working out. He aspires to be a taxidermist. Hayden lives by the saying "everyone has challenges, mine are just different" and has a great sense of humour.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Monday, May 7, 2012

Jonah :: Child with Spina Bifida

We found out or son Jonah would have Spina Bifida on our very first ultrasound at 19 weeks. A month later we went to the specialist and got some great news...the lesion was low (L5/S1)! Our doctor said "If you have to have Spina Bifida this is the one you want." All our appointments from there just got better and better! On July 5th 2011 Jonah came into the world via C-section weighing 7lbs 2oz and 22in. long! When he was born we found out he was soo tightly squeezed in the womb that his legs were up in his face. With a little physical therapy his legs went back to normal in less than two months. Two days after birth he had his first surgery to fix his back and and seven days after that he had his shunt placed. We spent a total of almost 11 days in the NICU.

A month after our stay in the NICU Jonah's shunt became clogged and he had to go in for another surgery to revise it. Now we have had no more shunt issues! At about 3 months Jonah's legs were casted to help with his clubbed feet. One foot was worse than the other and that one was casted up past the knee..the other only past the ankle. He had to have casts for about 3 months and now we are on to the boots with the bar between for 16 hours a day. We visit the Spina Bifida Clinic once every 6 months and see over 16 specialists!

Now Jonah is almost 8 months old! He's weighing over 22lbs and over 27in long. He goes to the bathroom on his own and has absolutely no issues there. Jonah has been eating solids now for over 3 months and he eats 3-4 meals a day! He learned how to sit and roll at 6 months and now stands with some help. Pretty soon he will be fitted for his AFOs to help him stand more. He recieves physical and occupational therapy through the Birth to 3 program and they come to our home every Tuesday.

We have been soo blessed to have such a smooth journey! Honestly there are days when I forget he even has Spina Bifida and strangers never notice it either because he is soo good natured! Jonah loves to laugh, sit, babble and scream Da-Da! I have never met a happier baby in my life! He is our little hero and I am HONORED to have such a beautiful blessing!

To read more about Jonah, visit his website at

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

Wednesday, April 25, 2012

Harmanie :: Adult with Spina Bifida

Harmanie (age 29) is recently married and has worked hard to make her home accessible. She loves to dance and uses the skills and knowledge from her University education to contribute extensively to her community.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 11, 2012

Ryan :: Adult with Spina Bifida

Ryan (age 35) lives independently in an accessible condo downtown near his workplace. Since graduating from Grant MacEwan Community College, Ryan continues to work hard and has succeeded in the workplace. He enjoys traveling, watching sports and spending time with family.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 4, 2012

Roman :: Child with Spina Bifida

Now that Roman is quickly approaching his 3rd birthday, I am constantly looking back and reminiscing on our journey. I never thought we would reach this point. I certainly never thought we would be this normal!

Two weeks before my due date, I had an ultrasound that showed Roman's Spina Bifida. I lived in front of the computer after that day. The way I saw it, I had two weeks to prepare myself, my husband and our 2 year old daughter for an event that would change our lives forever.

I was devastated. I woke up every morning to the painful reminder that this wasn't a dream. I went to bed every night hopeless and beaten. Exhausted from worry and despair. My one lingering thought was, "Why my baby?" After thinking of all of the horrible things I've done in my life and negotiating with Karma and God; I decided this wasn't how this is going to happen. Roman, wasn't going to be born a "devastating event" Roman was going to be born to two parents who, for a whole year, begged for him. And now he's ours.

His birth and the months following were a whirlwind. Roman was born weight 8 pounds 9 ounces, and 201/4 long. He was perfect. He was amazing and he was mine.

The day after he was born he had back closure surgery, a week later he had the surgery repeated, because it wouldn't heal, and was still leaking. A few weeks after we got home, he had his shunt placed, When he was four months old he had emergency surgery to repair a rare heart deformity called a double aortic arch, At some point he had a shunt revision surgery and we trailed off with a couple ear tube surgeries, adenoid removal and a double leg casting for a tendon release.

10 surgeries before he was 2 years old. I thought, "This is our life now." I thought we would live in and out of the hospital, I thought we would fight off stares and points and whispers, I thought we would neglect our daughter, I thought we would have machines and tubes and I am incredibly happy to report that I thought wrong.

Life with a child with Spina Bifida is unpredictable, it's an emotional roller-coaster, It's messy and it's scary at times. Hell, terrifying.
But it's the life handed to some of us, and for me. I don't have time to get caught up in the "why me" and "how come" and the "I can't do this" Because I've got play dates to attend, a park to explore and this coloring book isn't going to scribble in itself.

If I could go back and change Roman's diagnosis, of course I would. I wouldn't wish this pain on anybody and certainly not my child. But I can't do that and can't dwell on the idea, so instead I advocate and I talk, and talk, and talk.

Check out their family blog at

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