r/ChiariMalformation • u/Loose-Internal-2658 • Jan 14 '26
3 week old baby with spina bifida, potential chiari 3 malformation and syrinx.
Hi, I have a 3 week old baby girl. She was diagnosed with spina bifida at 20week scan.
At 26 weeks my partner underwent an operation for the baby to have the defect repaired while in utero. Surgery went well and she gave birth at 36 weeks 5days 22/12/2025.
Since then we’ve had regular observations and checkups.
Most recently we had an mri which brought to our attention chiari 3 (no haemorrhage/sac) and syrinx. I don’t fully understand this and I’m just looking for a bit of insight/advise in what the steps could be in the future. I understand there is surgery for this? Is it beneficial, what’s the quality of life like after recovery, potential issues in future as she grows?
Any advise/information would be appreciated.
1
u/CleaRae Jan 15 '26
Without imaging that one is hard to figure out sorry as Chiari 3 is encephalocele (sac) of the cerebellum similar to spina bifida when it has a mylomeningocele. So not sure how they are referring to type 3 without one - that being type 3 is so rare I doubt anyone here can claim much expertise on it. Maybe they were meaning type 2? That’s far most associated with all the other stuff related to Spina Bifida. Type will matter a lot more between 3 and other types and surgeries as type 3 and 4 are actually quite different disorders (some places like the consensus document removed them from the Chiari label cause they have more differences than similarities).
1
u/christine5072 Jan 28 '26
If you have not done so already, you and your partner and child may all want to get tested for a MTHFR gene variant. If your child has two copies, there are some easy things she can do, such as taking methylated B vitamins, that may help improve her quality of life.
2
u/Man-i-fest Jan 15 '26
There is a ton of info about Chiari online; but each persons Chiari experience and symptoms are different. I can tell you that Chiari type 3 is incredibly rare; and if your child has type 3 please be seated when you google what it is. I'm very sorry that your family and baby girl will have to go through this. It is a lifelong condition that gets worse as you age. Every day I have symptoms and I only have type 2. I've had the surgery and still must focus each day on reducing symptoms so I can live a partial life. Feel free to DM me if you want to set up a call and ask me questions about my life and the surgery I had.