In 2011, 20 weeks pregnant and on my 27th birthday, we sat in an ultrasound room and found out that our twin babies were both girls and that one had Spina Bifida. According to the Spina Bifida Association, SB is the most common permanently-disabling birth defect. Basically, it happens when a fetus’s neural tube, which becomes the baby’s head and spine, doesn’t close all the way, leaving some sort of opening. Our daughter has myelomeningocele, which is the most severe type, and means that part of her spinal cord and nerves were coming out of this opening. She had surgery to close the opening within two days of birth, and about a year later, had a shunt placed to help drain excess fluid from her head. Like many people with SB, she has disability in the lower part of her body.
The main thing I want people to know about SB is that it’s just another way of being a person, living life in the world. My daughter is a little girl, learning to navigate the world just like any other child.
Here are posts I have written about our SB journey, from newest to oldest:
- out came the mama bear
- why we #embracethebif
- we all fall down sometimes, and yet
- it’s not that hard and I’m not that special
- yes, I have a child with a disability. I’m still pro-choice
- this is what spina bifida looks like
- I wish the SBA would shut up about folic acid
- coming into awareness
- Why I call myself a #spinabifida mom
- a spina bifida update: potty training?
- A Claire update
- Watching Frozen with my daughters: disability as superpower and the power of sister-love
- never say never to say this
- why babywearing rocks, especially with special needs
- parenting olympians
- inspiration?
- my child with a disability is not my hero
- Claire WALKS!
- signs
- well aware
- toddlers are terrific
- new routines
- Claire CRAWLS
- Claire is doing great
- surgery for Claire tomorrow
- Claire Bear update: neurosurgery on Monday
- Claire Bear: an update
- Ms. Bufflo goes to the capitol
- Awareness
- Claire update: no surgery this week
- surgery for baby Claire
- a birth and near death story
- a quick update on Etta and Claire
- thankful that no news is good news
- 6 month pregnancy update
- good news and the best possible bad news (initially, they thought Claire had the least-severe form of SB, but it turned out to be the worst)
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Stories like this really makes me appreciate my healthy child. It’s mom’s like you that deserve the “Mom of the Year Award” over and over again. God bless you and your family in this journey. I cannot imagine how difficult it can be for her sometimes, but I am sure your love keeps her going.
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So glad to have come across your family’s story.
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Hi
I have a son with SB too. My son Noah has MMC. His lesion is L1 but I think he functions at T12.
He does not move his legs and is cathed. I’m curious, what is Claire’s lesion level?
Karen
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Your Story Is Very TOUCHING And I Know Life Will Only Get Better For Your family. My son was born with spina bifida also and he is 22 now. He has had to have a few surgeries through his years but very thankful for him. As you are with your child. Keep looking up it will only get better.
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I just found a picture of your girls on an old question about formula. I recognized one may have hydro and clicked the link to your blog. Serendipity. My daughter was born 6 months ago. She has SB Myelo L3 down hydro and a shunt. She also has tracheomalacia due to symptomatic Arnold Chiari Malformation 2 and has a trach and g-tube.
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Hi Sara
My name is Jacqueline
I also have a son with SB. I was 20 weeks pregnant when the ultrasound chose that my little boy will be born with such defection. Actually I’m African. I never heard about SB before. So earn that was a sock. My son Prince lesion is very low. He is 4 yrs now. He walks with an ankle brace on the right leg. I want to ask you apart from the cath there is any other to potty train him? I really want to talk you if possible.
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