Re: Lost pregnancy due to Arnold Chiari malformation

My daughter (now age 34) has Arnold Chiari malformation. She was a fraternal twin (not known while I was pregnant) which I lost at appx 20 weeks. There was not any genetic or any other kind of testing done on the lost fetus at my daughter's birth at 37 weeks.

I had a terrible pregnancy - which I believe was due to my body trying to rid myself of the expired fetus. As you can imagine, I was very surprised to know that I had been carrying twins (this was 1974 - long before ultrasounds were used in pregnancy). The doctor told me, "You were expecting one baby and you have one healthy baby, forget about the other." Such compassion, yes?

When my daughter was 19 she had a very serious episode with abrupt brain swelling, which occured after riding a high-speed roller coaster. We were told that we were 'reaching for straws' at asking the connection to the roller coaster, but now, it is absolutely considered a no for those with Arnold Chiari.

My daughter has one healthy 5 year old son and has experienced miscarriages. She was told that one was due to a 'genetic malformation' but no further details. None of those miscarriages were beyond the eighth week. She has, as a precaution, supplimented with folic acid due to the research that shows AC to be a folic acid deficiency.

Pregnancy and vaginal delivery for her is an extreme risk. Due to the theory that pushing would further herniate her spinal column, she is a candidate for caesarian birth. Spinal or epidural anasthesia is extremely risky with her as well. She has had epidurals twice in her life, successfully, so far, once for an appendectomy and once for her first birth.

Arnold Chiari (the herniation of the brain stem into the spinal column area) can worsen with some activities. Traditional medicine wants to jump to surgery to repair the herniation, which very often leaves the patients with worse quality of life than before. My daughter opted to NOT undergo the recommended surgery when she was 19. We were told at the time by no less than four neurosurgeons that "she would die before she ever knew she was pregnant due to increased fluid levels, or that she would be in a wheelchair, permanently, before she was 25." Thankfully, neither has come true.

Her quality of life since initial episode and diagnosis has been excellent. She does almost everything in her life, except ride high speed rides and other risks such as sports that would jerk her head.

The meds that the traditional docs prescribed, in addition with the very large dose steroids, caused way more problems for her. We found, through frustration, that there were a few natural diuretics that worked better in keeping her CSF levels down. She also has stayed as true as practical to a natural even organic diet.

Good luck to all who encounter this syndrome. To this poster, don't be afraid to try becoming pregnant again. I would agree that supplimenting your diet with naturally occuring folic acid, plus a GOOD natural suppliment makes good sense. You need to do this months before conception. Tweet