In case you’re uninformed, Mira has Spina Bifida. This is a common ailment affecting roughly 1 out of every 1000 births were the spinal cord isn’t fully closed during pregnancy. The side effects can range from paralysis and bowel/bladder problems to nearly no side effects at all. In Mira’s case, she’s a perfectly normal 4 yr old that has full control of her legs and feet. She does need help with a regular schedule of catherization to go to the bathroom. And she has two “shunts” that drain her brain and keep her ventricles from building up too much fluid pressure. Read all about this on her website: Mira’s Web. (The site does need some updating.)
Given these issues, she is doing great and to anyone else, there’s no way to know that she’s any different from any other kid. We had a bi-annual checkup on Monday and the doctors agreed that she’s healthy and passing expectations so far as her development with Spinal Bifida goes. But - the x-rays show that the buildup of fluid in her brain is significantly larger than the last scan back in September. This means that one or both of her shunts are not working properly. Although there aren’t any symptoms yet, this hydrocephalus can have lots of bad side effects if not addressed, so Mira will have surgery this coming Monday to fix the tubes in her head.
Although all surgeries have intrinsic risk, this is a pretty routine surgery. The worst side effect will probably be the loss of her long, beautiful hair. But regardless, your compassionate thoughts are much appreciated. Doctors will start by shaving and investigating the shunts where they are attached to her skull. With as little intrusion as possible they’ll continue to poke around until the blockage is found and the faulty part is replaced. Hopefully this is in a portion of the shunt that’s easily reached. We won’t know until afterwards.
Either way, it’ll be a long stressful day and we’ll all look forward to when it’s over and Mira’s brain drains begin doing their job again. Jen will update her site soon and we’ll continue the updates there.
I noticed you added a link for Spina Bifida. I really like the March of Dimes web site. It explains it all very well. Visit here — March of Dimes: Spina Bifida
Mira was born with a myelomeningocele, the most serious form of Spina Bifida, but it was very low on her spine — this contributes to how well she is doing. She also has a Chiari II Malformation. If you look at the March of Dimes Website, it explains these features and how it affects Mira’s life.
And, I will update Mira’s website soon… Monday after her surgery.
Mira had her surgery today with great success. Both her ventricle catheters were plugged up and replaced. It was minimally invasive and she’s only lost a small patch of hair on the back of her head. Now she just has a headache that continues to lessen.
The most difficult part has been accommodating “the Peck” (or Davie the Dad). Intolerably immature, he’s been pushing people around to guarantee he holds Mira’s spotlight - even against nurses’ wishes at times. Oh well, sometimes the best way to shut the baby up is to give him the bottle. The bottom line is that Mira not be unduly upset just because the Peck can’t control his emotions. It may be a loooong night. We’ll see.
Otherwise, Mira will be fine and back to her normal self again soon!