Hoping to get some info from mothers who have ataxia and have gone through a pregnancy. Feel free to inbox me if you'd prefer.
My wife has FA and is 7 months gone. She's mobile but dependant on crutches to get around and fatigues quite quickly. She is under a speciality consultant for the pregnancy and is stuck as to whether to birth naturally or have a planned c section. However, I don't feel the consultant quite understands FA and am shocked by his response that theres little difference between the options except being able to plan it a little better.
Here are my concern for both options:
C section - A highly invasive surgery (to my understanding abdominal muscles are not cut), generally less risk for mother and child, recovery would be longer and likely far more painful. Additionally, her unstable mobility would increase the risk of falling / damaging stitching.
Natural - If all goes well, generally less pain following birth and slightly shorter recovery time, reduced injury to key abominal muscles. However, I'm concerned with her general strength and how easily she fatigues and thus her ability to naturally birth. Therefore, resulting in an unplanned c section, with now much higher risk to them both, much higher risk of injury, generally longer recovery and now having to recover from two traumas.
Thanks in advance
Written by
Adam1420
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I've never been pregnant/given birth so can't give first hand advice but, if your wife goes for vaginal birth, she should have an epidural so that if she needs an emergency caesarean she doesn't need to be given general anesthetic. My sister (no ataxia) is due to have twins and was told to do this which is were I heard this information. Caesarean takes a while to recover and it's possible she may lose muscle/ability to do things if she needs to rest for a prolonged period of time (the ol' if you don't use it you lose it) but obviously I don't know her or the future so she may also bounce back fine. If her doctors and your wife are okay with giving natural birth a go then I've heard it's way better (postbirth) but be prepped for needing a caesarean maybe? Unfortunately it's better that your wife and you discuss it with your consultant and really drive home your worries and ensure things are put into place ready for the birth and after birth recovery.
There was an article in edition 204 (page 19) of the Ataxia magazine (produced by Ataxia UK) by a young lady who has FA and has recently had a baby. The magazine can be found at the following link
Goodness, that was quick! I am very glad you found the article helpful.
I've been pregnant more then once, I never got diagnosed till my 30's. So basically all the things you deal with in ataxia it's plus pregnancy, I didn't find it difficult with a becoming a mother feeling. There are many things to worry about, there's many things to account for having life and being alive.
That all sounds like a lot, always get many opinions and don't let doctors make you hesitate to question.
I just wanted to follow up on this feed for anyone who may happen to read this in the future.
We decided to opt for an elective c section one week earlier than the due date, choosing to have a spinal epidural to reduce the time my wife was under anesthetic. Eventually choosing this route due to the risk of exhaustion and ending up having an emergency c section.
The operation went as planned without complications. However, the anaesthetist was not completely aware of some of the conditions associated with FA and so I had to gently remind her that my wife has poor circulation and lack of sensitivity in her legs and so would not respond to the prick tests up the legs to ensure the anesthetic worked as expected !!
Following the operation my wife had severely limited movement in her legs for approx 24 hours and did not get out of bed. The hospital were not really equipt to help with her disability (showering & toilet) and as a result we ended up going home 3 days after arriving. I felt confident enough that I could manage her needs at home better, as we prepared our bungalow before leaving. E.g. well placed furniture to hold onto, unrestricted access in/out bed, shower seat etc.
As mentioned above, my wife can walk aided, however, we decided to make use of a wheelchair for the first 2 weeks. We made sure she stood up and walked every day, starting at walking maybe half way to the lounge and wheelchair the remainder. However, this walking did require an excessive amount of support, to support her weight and correct her balance. Just lifting her legs up and down were a challenge for the first week or so.
Having the wheelchair was super helpful and really aided her operation recovery, and in my opinion prevented completely unnessessary pain and damage.
She was also prescribed a 6 week course of blood thinners which we administered ourselves (to prevent blood clotting due to lack of mobility), drank plenty of water, took our time and got active as often as possible, even if it was a short amount of time.
Overall it probably took her the full 6 weeks to get back to normal.
She's an incredible mother of a now 5 month old !! There are adaptions she had to make such as having multiple changing mats, change trolleys, muslins etc so that where ever she is, she has what she needs very close by. We have a house pram to help move the baby around the house instead of a Moses basket and a NextToMe cot to reduce how far she has to go for night feeds. She doesn't carry the baby around the house in her arms unaided but is able to manoeuvre off the sofa and get the baby in the pram.
If anyone has questions please feel free to get in touch! Best wishes, Adam.
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