19 weeks preganat and been for scan and received very bad news...

[babyalfie]

Hi there my mother posts on here on this name but she said ou would not mind me posting.

Okay I am young mature mum and I am diabetic on insulin. My control has been very bad for the last year.

ANyway I am pregannt and 19 weeks and had cardio scan in Leeds on Wednesday and my baby has this...
congenitally corrective transposition of the great arteries and septal defect disorder.

Basically it means the heart is all the wrong way round- back to front and upside down.

There are more problems i think too but this is a very rare and the Leeeds team had not seen one before so I guess they are doing research into it as we have a meeting on Wednesday. I am so upste as is my mother and o not know where to turn. I just want to give my baby any chance of survial or do you think i am silly?

Good for you wanting to give your baby the best chance. You are obviously a caring person and will no doubt make a great mum. I believe that you will never regret giving him a chance whatever happens. Best of luck to you.

hi babyalfie. My baby had a chd. As the main problem she had was univentricular heart which meant that only palliative surgery was available with a heart transplant in her teens - and no likelihood of making the list, we decided to terminate and did so at 25 weeks.

she also had transposed great arteries, this is serious but correctable, is your baby's heart completely reversed? I can't really give you any advice on that condition as I only know about things my dd had. they can do absolutely amazing things now and i truly hope that things are not as bad as they seem. Whatever happens you can get through it and you will. i even have fond (in a way) memories of that time, it sounds wierd but it was my only experience of my daughter how can I not have good as well as bad memories?

I am not a heart expert but it seemed that if she had both sides of her heart the transplant would not be necessary and then any surgery could actually fix the problem rather than just being palliative. I don't know if that makes things more positive for your little boy as i havent heard of this problem before. I guess you cannot know until wednesday for sure but do your research before you get there. We also had a second opinion - i made the consultant write me a generic referral and phoned round to get another appt. The two diagnoses were the same but their outlook was very different, the first was negative and second was more positive but helped us be sure about our choice.

• look at the little hearts matter website, think it's www.lhm.org they are specifically for parents with children with heart disorders, it is a members site but we saw how people were livign with our child's disorder
• you can cat me if you have any questions about a termination at this stage, i'll give you a brief explanation at the end, sorry if it's grim

It is important to have some distraction, after the anomoly scan i started knitting a really complicated blanket and basically spent three weeks crying and knitting and continued after i gave birth. It is a memory of her and of that sad time. It was very cathartic.

Briefly, in a termination after 24 weeks they inject the baby to stop its heart then induce birth. I gave birth 2 days later, normal birth but obviously smaller baby. The worst worst worst part was the injection, absolutely hideous and was hysterical, afterwards numb, birth was a relief post birth you have all the normal hormones and milk comes in, horrible reminder of what you do not have. Sorry if that was upsetting but i tried to keep it factual.

I hope the last paragraph is pointless for you and that everything works out well.

take care of yourself and make sure you are sure of your choice once you make it.

xx

Babyalfie ,so sorry to hear your news . If Leeds havent seen this before ,then more than likely they will refer you and your baby to a hospital that deals with this condition. As for your nursing ,well i didnt start my training until i was 27 ,so dont worry about waiting for a few years to start ,maybe until your little boy has had surgery and has started nursery. All my very best wishes

Nursing is one of those courses where a lot of people start later on in life so don't worry that you'll be the oldest one on the course. You definitely won't be.

Good luck for wednesday and I hope you get some answers

hello there we are back from Leeds and it was okay news and myself and my mum had prepared for the aorse!

Okay my babies heart condition is very very rare and he needs a dual switch meaning it needs a atrial switch, arrtrial dwitc. it is a double switch but decided to continue with the pregnancy . Today I also had an amnio as it can be linked to other disorders so please wish me look as I get my results thursday afternnoon and so scared.

Thanks all.

Keep us posted with the results of the amnio honey. Wishing you more luck. But good news so far. Big hugs. xx

p.s Do ring ARC yourself even if you just want to pass the time and talk about how you feel, they are very lovely there.

Babyalfie

I am so pleased the meeting went ok on Weds and you have chosen to keep your baby. I hope and pray the pregnancy continues to go well and when the baby is born he/she will receive the best care.

By all means contact all the relevant charities and groups to support you.

WELL... we have the amnio results back and the baby has no more complications which is good I beleive. I am very worried I know I am but I am going to continue with this bbay and give it cahance. The operation is dual switch one but if sucessfull it will mean the bbay lives healthy life afterwards and the consultant say 90% survive so I am keeping my fingers crossed. If we did not go for surgery then we could just see how things go but would definatly need a transplant at some stage.

I will keep you all informed and thanks for being there.

Hollie x

What great news. I know this pregnancy will not be the easiest, but try and enjoy this precious time of bonding.
Praying that you and your baby boy stay healthy!

oh thanks so so much I really do hope I am doing the correct thing.