From the SBA website:
“Over 250,000 Americans are in the Spina Bifida Community. An estimated 166,000 people in the United States are currently living with Spina Bifida, the most common permanently disabling birth defect. Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn’t close completely. There are 65 million women at risk of having a baby born with Spina Bifida. Every day, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects.
The effects of Spina Bifida are different for every person. Up to 90 percent of children with the worst form of Spina Bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a “shunt” that helps drain the fluid—the shunt stays in place for the lifetime of the person. Other possible conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy, and social and sexual issues.
Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life. People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are. People with Spina Bifida have careers, get married, and have children just like people who do not have Spina Bifida.”
- An initial surgery to close the opening in his spine
- Placement of a shunt to drain excess fluid from the brain (hydrocephalus)
- Hernia repair (that’s just normal baby stuff!)
- Supraglottoplasty (meaning that tissue was taken from his airway in the hopes of preventing the need for a tracheostomy) Which leads us to…
- Tracheostomy (for Obstructive Sleep Apnea and a touch of Central Sleep Apnea too)
- Shunt Revision— yes, they can stop working.
- Shunt Revision— yes, they can stop working, AGAIN!
- Shunt Revision— enough already!
- Stoma Closure – After his trach was removed in June of 2014, the little hole in his neck needed some help to close completely so it was done surgically in December 2014.
Simeon’s spinal defect was at the top of the lumbar spine (L1). He has little movement in his legs and hips and does not bear weight. Although it is unlikely that he will walk, he army crawls and is quick in his wheelchair. I don’t see him slowing down anytime soon!
Most of Simeon’s surgeries are status quo for kiddos with Spina Bifida. The trach, however is uncommon. Most children with SB do not require a trach and, while sleep apnea issues can occur, they do not usually require intensive treatment. Simeon had his trach placed in July of 2012 and it allowed him to grow and thrive. His trach was removed (decannulation) in June of 2014. He’s doing great!