Baby anencephaly

FreddieFrugal

Hello there,
About 6 weeks ago our first pregnancy ended in termination when we found out at twelve week scan that the baby had a Neural Tube Defect called anencephaly. This is when early in the development of the baby (first few weeks) the skull fails to form completely. basically the top part of the skull is missing, meaning the brain cannot develop fully, it's a terminal defect.

The baby would continue to develop, but from birth would only be alive for a few hours or up to a day. When I say alive, since the baby lacks anything but the brain stem, it's never really alive in the way I'd understand it, it can't think, feel or interact in anyway with the world.

It was horrible to be told this, especially after seeing the baby's heartbeat and it kicking around, looking so alive.

At least we had the option of termination. We read a recent story about a young woman over in Ireland (N-Ireland maybe) who had the same thing, but because of the REDICULOUS laws on termination there she could not have the pregnancy terminated. She was being forced by the government to carry to full term and give birth to a baby that they knew was already dead. Wouldn't allow her to come to Britain to have the procedure. I know for a fact having experienced it for myself how incredibly evil that is. (If it's for religious reasons that they don't allow it, what kind of God would want to inflict that kind of suffering on a person, and more importantly, what kind of idiot would consider that to be worthy of devotion)

Anyway, the reason I'm posting is, I wondered if anyone else on here had experience of anencephaly, either themselves or in their family or friends.

We're trying again, hoping for a healthy child. Did anyone you know manage to have a healthy child after? Looking online you just find forums with people despairing about it happening again to them.

GwylimT

The best of luck for baby number 2, I don't think is has a genetic bearing, you and baby were just very unlucky, low folic acid can increase the likelihood of this happening. You can focus on it happening again, or you could enjoy ttc and the first few weeks of pregnancy, none will effect whether or not your baby is healthy.

I think the religious argument tends to be "god is testing our strength and devotion" because that makes it so much better...

I actually don't buy products made their or use any of their companies as I don't agrew with their governments stance on abortion.

Our youngest is disabled (poor forgotten middle child soon!), he basically had an issue with bone growth, so large proportions of his chest were fused as his ribs were simply too large. This also prevented him from eating and breathing properly until various surgeries. While we agree that couples should have a choice we wouldn't have an abortion no matter what the circumstances were, but we have the luxury of that choice. We were urged to have an abortion from 12-32 weeks! He just needed some areas of rib shaving, a small transplant of cartilidge and his feeding and breathinf tube until this was done, although he only started needing the breathing tube from 16 weeks. He also has cerebral palsy, but its completelt unrelated and fairly mild.

FreddieFrugal

Thanks for response. We went to get prescription from GP for the higher dose of Folic, 400mcg is what's recommended for all women trying to conceive and first twelve weeks, which is what she was taking, she's now having 5mg folic as that is supposed to reduce the risk.

We're also just generally going to a lot of effort to make sure we're having a good healthy diet, not that we were unhealthy before, but doing 'something' feels better than doing nothing.

We also aren't keen on idea of abortion unless it's for a good reason, too many try to use it as birth control. But when it was an option of carrying a baby for another 27 weeks that was going to die or terminating so we could try again in that time, termination was definitely the lesser evil.

I'm glad your sons condition improved with surgery and that he continues to have a happy and healthy life

Laconic

I'm sorry to hear of your loss.

One of my close friends did have an ancephalic child. She chose to carry to term because that was what sat best with her conscience. I supported her fully in that, but man, it was hard, brutally hard -- for the record, I'd have supported her if she'd chosen to terminate. She and her husband have had three healthy, cheeky kids since.

I'm not a doctor, don't play one on TV, but my limited understanding of neural tube defects is that they're more likely to be a developmental disorder* rather than a genetic one and so it's a bit like being struck by lightning, the tendency is that it won't recur. Beyond taking lots of folic acid and making sure that she's not diabetic (or if she is, that it's under control), there isn't a huge amount to do.

Online fora are of necessity strongly self-selected and it's not surprising that you hear much more from the people who do have an underlying problem (e.g. their bodies don't process folic acid particularly well to name but one of many dozen possibilities) than the more typical people, for whom it was a one-time tragedy. Please take your concerns to your doctor and do get a specialist referral.

Hang in there.



*my personal non-scientific analogy is that of a house put together by teams of very impatient workmen with their instructions and no foreman overseeing the whole thing. In a genetic disorder, the instructions are wrong with results that are anywhere from unimportant to catastrophic, whereas in a developmental disorder, there's some mis-timing and the rest just carried on without them e.g. the plumbers didn't work fast enough -- or didn't show up and the house just got built without a complete set of internal plumbing.
If it seems a wonder that we're born, it is: depending on who's looking and how the investigation is done, it'd seem that between 50 - 66% of all human conceptions never end up a live baby.

burnsguitarman

Sorry to hear this. It's so trumatic, but it really isn't anybody fault, and nothing you did or could have done, would have had a different outcome.
My sister, went on to produce 2 healthly daughters after she had lost a baby to Anencephaly. I think it is purely, fate that causes this problem, and years ago (before routine scans) babies would have probably been 'lost' naturally or died during birth.
Allow yourselves to grieve, and look to the future, in all probability you will have a perfectly healthy bundle of joy, in the next year. Good Luck!

seven-day-weekend

IanRi wrote: »

Hello there,
About 6 weeks ago our first pregnancy ended in termination when we found out at twelve week scan that the baby had a Neural Tube Defect called anencephaly. This is when early in the development of the baby (first few weeks) the skull fails to form completely. basically the top part of the skull is missing, meaning the brain cannot develop fully, it's a terminal defect.

The baby would continue to develop, but from birth would only be alive for a few hours or up to a day. When I say alive, since the baby lacks anything but the brain stem, it's never really alive in the way I'd understand it, it can't think, feel or interact in anyway with the world.

It was horrible to be told this, especially after seeing the baby's heartbeat and it kicking around, looking so alive.

At least we had the option of termination. We read a recent story about a young woman over in Ireland (N-Ireland maybe) who had the same thing, but because of the REDICULOUS laws on termination there she could not have the pregnancy terminated. She was being forced by the government to carry to full term and give birth to a baby that they knew was already dead. Wouldn't allow her to come to Britain to have the procedure. I know for a fact having experienced it for myself how incredibly evil that is. (If it's for religious reasons that they don't allow it, what kind of God would want to inflict that kind of suffering on a person, and more importantly, what kind of idiot would consider that to be worthy of devotion)

Anyway, the reason I'm posting is, I wondered if anyone else on here had experience of anencephaly, either themselves or in their family or friends.

We're trying again, hoping for a healthy child. Did anyone you know manage to have a healthy child after? Looking online you just find forums with people despairing about it happening again to them.

Sorry for your loss. I do indeed know a young couple whose first child had this condition, they now have two healthy and thriving children.

Wishing you well for the future.

Spendless

Hi, Really sorry for your loss. The same thing happened to me in my first pregnancy, though with a different condition.

We asked for an amnio prior to termination and a post mortem, in an attempt to find an answer as to why. It came back it was just pure chance.

I went on to have 2 healthy children, boy and girl now 15 and 12.

Have you been in touch with
http://www.arc-uk.org/

I found them to be a great support.

btw- I was told by my hospital to not try again for 12 months (this is to get through a grieving period, date the baby would have been born etc.). It was advice I ignored and I spent the whole next pregnancy worrying myself stupid that something was wrong.

heartbreak_star

So sorry for your loss OP!

I don't have any advice or experience of this...I just wanted to wish you well.

HBS x

VfM4meplse

What a horrible situaton, must be heartbreaking fot parents-to-be.

I don't think people ever stop worrying about their children, so perhaps concentrate on enjoying the present and think about coping strategies later, should the worst happen (which is very unlikely).

Birdie85

I'm very sorry for your loss. My brother and SIL went through the same with their first pregnancy and it seems it was just sheer bad luck. SIL did everything 'right' and it still wasn't to be. They went on to get pregnant again relatively quickly (IIRC they had the termination in March and she was pregnant by August) and that was a perfect pregnancy, they had extra scans for reassurance but everything was fine and they have a brilliant 2 year old boy now.

I think it's cruel to force anyone to continue with a 'doomed' pregnancy. I don't think I'd be strong enough to do that.

Good luck for the future.

onlyroz

Sorry for your loss. The situation of the lady in Northern Ireland makes my blood boil. How could they be so cruel?