anacaphaly and future pregnancys

[k8_005]

hi there we have just been told our second pregnancy also has anacaphaly and will be terminating (its a non viable with life condition) does anyone know if you can go on after 2 confirmed cases to produce a helathy baby or if it means we will now need to look into adoption? xx

 

[Esoames]

how awful for you. I'm really sorry I don't know the answer. Is genetic testing available to you? Xxx

 

[k8_005]

how awful for you. I'm really sorry I don't know the answer. Is genetic testing available to you? Xxx

I don't know I will ask them at hospital as it may be and might help thanks for reply x

 

[Esoames]

I only ask as my friend had his stomach removed due to cancer in the family and he carries the gene, his son also does. So they had genetic testing to have another baby who was born last week, hopefully without the gene. fingers crossed there is something they can do for you. It might mean an egg or sperm donor but you can at least carry a baby.

If you do end up going down the adoption route there are so many babies looking for loving homes. But try not to think that far ahead, keep positive if you can.

Emma xx

 

[k8_005]

I only ask as my friend had his stomach removed due to cancer in the family and he carries the gene, his son also does. So they had genetic testing to have another baby who was born last week, hopefully without the gene. fingers crossed there is something they can do for you. It might mean an egg or sperm donor but you can at least carry a baby.

If you do end up going down the adoption route there are so many babies looking for loving homes. But try not to think that far ahead, keep positive if you can.

Emma xx

thankyou we have discussed adoption and would definatly consider it an option, but were under the impression waiting lists were very high unless it was for children over age 12 and i have to admit we have no rpevious expierinace of older children so may struggle with that, will find out more about all the avenues thank you for taking time to respond, we are going to try and find out our options x

 

[cosmicgirl]

So sorry hun x

 

[Laura_C]

Firstly honey, I just want to say I am so sorry you are having to go through this

There doesn't seem to be much on the net about more that one case but I did find one case where the women had been advised to now up her folic acid to 10mg a day for a year before TTC. I think her husband also took folic acid, although this was not specifically necessary they thought. If it's a problem with your body not absorbing the folic acid properly I would have thought they could test somehow to see if this is the case. Also iron and vitamin B6 are important for absorption of folic acid.

If u were you though I would most definitely want genetic counselling to rule out any possible genetic link. It seems it's unheard of to have anymore than two cases though which is a positive

 

[k8_005]

Thanks Laura its difficult for us and family to understand as no family history of even mc ped alone genetic or abnormal issues thanks for advice I'm hoping to speak to someone from genetics tommorrow mayb they can tell me.more? X

 

[kirstymichelle]

I am so sorry ,

I had never heard of this until you mentioned it and i have done a lot of reading for the aast hour , mainly of stories of ladies that choose to go on with their pregnancies and i have cried a lot!

I wish you peace and love x

 

[lanny]

I don't know if its anything like this or not but same kind of thing happened to my auntie and they did the gene testing and her and her o/h both had the same faulty gene, they told her there was a 40% chance with each pregnancy. They also told her the chances of her meeting somebody with the same faulty gene was very rare lots if ppl have faulty genes but it's only a problems if two ppl meet with the same one, she has a son from a previous relationship would is totally healthy, like I say I don't know if this is anything like you just thought you might like to no her story xxx

 

[hayels]

am so sorry hun. am not sure if it would help but there is a type of ivf that you can have that goes in to a lot more detail into your genes and chromosomes. i think its called ivf phd or some thing like that might be worth having a look. so sorry again big loves xxxxxx

 

[cosmicgirl]

I saw that on tv recently. This guy with treacher Collins syndrome was looking into it to have children with his oh x

 

[k8_005]

this is very interesting to hear about everyones family stories and the things you all know thankyou for taking time to share it with me, yes from what iv now read i guess it is possible that its a faulty gene that one or both of us carry in which case maybe ivf would help? also if we at least knew what had caused it then wouldnt feel so rubbish i currently just keep feeling like my body has failed me again! its so frustrating, iv never posted in this section before as not really had any experinace previously of problems or long term issues, thank you for all your support i hope you all find the answers you need and are able to go on to have healthy babies soon xxx

 

[k8_005]

I am so sorry ,

I had never heard of this until you mentioned it and i have done a lot of reading for the aast hour , mainly of stories of ladies that choose to go on with their pregnancies and i have cried a lot!

I wish you peace and love x

yes last time we read a huge amount about this as i was intially determined to keep the first one then i read about the others storys and didnt feel we were able to do this as often the heartbeat stops or if they get through labour have less than a day with their baby during which time the docs will do nothing, for me that wasnt an exsistance i wanted for our child then and not what i want for the one i have now its heartbreaking to decide what to do but for US and of course everyone will feel differently termination is the lesser of two evils despite wanting the baby very very much.

 

[kirstymichelle]

I am so sorry ,

I had never heard of this until you mentioned it and i have done a lot of reading for the aast hour , mainly of stories of ladies that choose to go on with their pregnancies and i have cried a lot!

I wish you peace and love x

yes last time we read a huge amount about this as i was intially determined to keep the first one then i read about the others storys and didnt feel we were able to do this as often the heartbeat stops or if they get through labour have less than a day with their baby during which time the docs will do nothing, for me that wasnt an exsistance i wanted for our child then and not what i want for the one i have now its heartbreaking to decide what to do but for US and of course everyone will feel differently termination is the lesser of two evils despite wanting the baby very very much.

I agree with you i have to say! after reading the testimonials of others it broke my heart and for me i know what i could deal with better emotionally . I am truley sorry for you and your OH x

 

[LouiseB]

I'm really sorry for your loss

I'm not sure if genetic tests could help to be honest just because the cause seems to be unknown which implies they can not identify it within the DNA but it is something that you will need to ask your doctor about.

I'm sure you are already being super cautious with your lifestyle but the main suggestions seem to be folic acid, as already mentioned, and avoiding toxins and free radicals and radiation and all those things that the effect of is not really known yet.

I'd try you both on a strong anti-oxidant just for starters and avoiding mobile phones and junk food and additives etc.

I hope this doesn't upset you, but apparently it is more likely (but not exclusive) to happen to girls so possibly if you conceived with a boy might avoid it happening.

Also, IVF isn't a quick fix for anything and in itself can be a very stressful and traumatic experience so if you are strong enough to try naturally then i think i would in the meantime.

I hope you are coping alright - i really couldn't imagine what you have been through xx

 

[LouiseB]

deleted dupicate

 

[k8_005]

hey guys just to update you i had an appointment with the consultant obstetrician who said 8th nov she would do a referral to genetics, not heard anything since tried ringing today got fobbed off between departments so now waiting for a nice lady in antenatal to get back to me regarding testing in oxford. also is a clinical trial going on into insotil and its uses to help provent anaceaphaly in pregnancy so i may try joining that study too... hmmm will let you know as and when i do.... x

 

[Spinneygirl]

Thanx for the update, hope your doing ok xxx

 

[LouiseB]

It's nice to hear back from you and that you are still moving forward after everything you've already endured.

I really hope they can help you to overcome it happening again xx