Thank you!
The following questions are not in any particular order. They're just questions people have asked us over the past few months.
1. What is hydrocephalus?
It was explained to us, that because Mia's back didn't form completely, it created a sack on her back.
That sack was full of spinal fluid. While she was still inside of me, the fluid would escape out of this sac into the amniotic fluid. Once she was born and performed the surgery to close her back, the fluid didn't have anywhere else to go. So it started collecting in her head. On average, a baby's head is supposed to grow 1 cm a week. In Mia's case, after her back surgery, it started growing from 1 cm - 2 cm every day. So she received her first shunt at 10 days old.
Hydrocephalus is the accumulation of cerebral spinal fluid in the brain.
2. Oh, but this is just a temporal thing right? She'll heal and won't need one anymore?
Nope. It's a forever thing. She'll always need a shunt in order for her brain to have the right amount of cerebral spinal fluid (CSF).
3. How do you know when a shunt isn't working? It's not like she can tell you what's wrong.
This is actually a question we get asked ALL the time. According to Mia's neurosurgeon, she has atypical symptoms of a shunt malfunction.
Symptoms of a shunt malfunction in a baby:
1. Vomiting
2. Sleeping too much
3. Not eating enough
4. Irritable
5. (The most scary to me) Seizures
6. The soft spot is bulgy and full.
7, Increased head size
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| If this picture were 3D, it would look more like a sausage |
MIA'S Symptoms of a shunt malfunction
1. Collection of CSF along the shunt (especially on her neck)
2. A full, bulgy fontanel (soft spot)
3. Vomiting
4. Regression in milestones or not meeting a milestone
5. They always measure Mia's head circumference, but it doesn't grow from side to side anymore. He head grows up.
As she grows though, and her skull fuses, when she has a malfunction, it will present itself faster and with more force. Yipee...
4. Is it fatal? How harmful is it?
If mistreated, yes. It can be fatal. It would be a very slow pressure-filled death. 😩
Just imagine, if she didn't get the care she needed, the fluid would continue to build up and her head would inflate like a balloon. Possible problems it can cause are,
1. Blindness
2. Seizures
3. BRAIN DAMAGE (this one is also very scary to me)
So I worry. I worry as soon as her shunt starts to swell up. Immediately I'm in the constant look out for symptoms of a failure. Most of the time she's pretty cheery and eats a lot! But, when I start noticing the developmental regression or delays, I go on panic mode and the E.R visits start becoming more frequent.
See, the thing is, I don't know when I'm "just in time" or "too late" when it comes to a shunt malfunction. I love Mia and how alert she is, she is a pretty normal baby. However, this can change if there's an infection or a malfunction. This time around it was so much faster. It only took a week for the CSF to collect around her shunt in her neck and start growing. It only took a week for her soft spot to be bulgy.
It can cause serious damage and she won't ever be the same. I'm scared out of my mind of that. So, sorry if sometimes I haven't let you hold her, or touch her head, or let you swing her around or made any comments towards the position she is in. Especially after surgery, I just want her to be okay. I want her shunt to work and her brain to do everything a normal brain does. Always.
5. Soooooo, can I hold her?
YES! Yes you can. Just don't touch her head, kiss her head, or swing her around! (THIS IS MOSTLY AFTER SURGERY). Give it time, until all her stitches dissolve, then you can kiss her head. Deal? ;)
Yes you can hold her and love her and kiss her toes! And play with her! She loves people and she LOVES getting attention. And I love it when others see how amazing and fun she is.
6. What does a shunt look like? Is it really brain surgery?
Well no. It's not. I just want you to feel bad for us and Mia...
NOT!
haha (sorry, that was rude).
YES IT IS BRAIN SURGERY!!! And the more I learn about it, the less I like it. The less comfortable I am with her having had to have had 3 of these surgeries! And the less comfortable I am with the fact that this is the only solution to this problem as of now, and if she doesn't have one, she dies. *Insert a grunt right here.*
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| Tah-dah! The actual device! |
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| Doesn't she have the coolest cranium you've ever seen?! Look at those teefies waiting to come in! |
7. How many of these will she have?
Who knows! Hopefully this last shunt they put in lasts us a while. The radiologist told me the other day that the shortest time he's seen a shunt work is, a weekend (the kid had to get 3 different shunts in ONE WEEKEND!). I would hate that! Then, he said the longest time he's seen a shunt stay in, is 14 years! Heck! I wish Mia's new shunt lasts her, honestly.
So meanwhile, we enjoy the ups! We enjoy all the smiles and all of the health she has. We celebrate every milestone and every little thing accomplished because people, THE BRAIN IS AMAZING!
For more general information please go here
If you have any other questions, feel free to ask! We welcome ALL questions in regards to our experience with Hydrocephalus and Spina Bifida.
THANK YOU FOR READING, FOR YOUR LOVE AND SUPPORT, AND FOR ALL OF YOUR PRAYERS!
*Update 2019: She's been surgery free for 2 years! Still I worry whenever she starts vomiting or if she falls and hits her head. So far, the surgeries haven't affected her intellect. She talks in English and Spanish and understands both languages very well. She loves drawing and telling jokes! She's a character.
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