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?

Oh I am so sorry.

I have no experience of this particular problem but wanted to post.

Wednesday seems a long time to wait, is there no one who could talk to you before this?

oh dear, I'm very sorry that you've had this news. I just tried to google it but so many learned looking documents came up I'm not sure I can make any sense of them to see what it actually means for your baby.

I think in your shoes I would be trawling the internet to get a prognosis. Can your midwife help you? Anyway of course you are not being silly.

Hi there

REally sorry to hear your news - we had a baby with heart problems (not the same thing though) and found the British Heart Foundation website was really helpful - this page should help

Also consider calling ARC - antenatal results and choices here as they can put you in touch with someone who has been through the same sort of thing and can help you work out what you want to do.

HTH

Sending lots of hugs and support xx

I am so sorry you are going through this. Gather as much info as possible, from internet, and books. Were you given any counselling numbers? If not there might be a support group you could get in touch with online.

I am sure you will make the right decision.x

yes I have contacted arc or should i say my mum has on my behalf.. I just feel sad and want to protect my little baby (boy). I just cannot go through with a termination as bonded with him. I am so so scared. The hearts is all tye wraong way round and I know the baby will need major heart surgery at 1 weeks to correct things. the right and left ventricals are in the wrong places too and the aorta in the wrong side.

They said at leed sthey have not seen a case like mine before and could not tell me much but i am going back wednesday for another scan and decide what to do?

i beleive i have to go through labour or can i go private to a termination clinic if pay??? just dont know how i can deliver a dead baby. help me please..... and why me?

I'm sorry you are going through this - I actually know someone who had a baby boy six months ago whose heart was transposed and he had the surgery at 10 days old. He's fine. He's a bit smaller than you'd expect at his age and he is growing slower but he's strong and getting there.

Whatever decision you make, make it once you've absorbed the shock and had a consultation with a neonatal cardiology specialist.

Argh! I had done a really long post and lost it!

Basically in complete transposition instead of a figure of eight circulation which is normal the baby has two circular systems that do not mix so the blue blood just keeps on being pumped round and round the body and heart and pink blood is pumped round andround between the heart and the lungs. The two systems do not mix and the baby becomes very poorly once a small duct called a PDA closes in the day or two after birth.

It sounds like your baby has a hole between two of the chambers of the heart. This is a very good thing in transposition as it means that some of the pink oxygenated blood can get round the body and to the tissues so the baby is less unwell. If a baby with transposition doesn't have a hole between two chambers of the heart and has complete transposition then the doctors need to try to keep the PDA open using drugs and make a hole (usually between the two ventricles or pumping chambers of the heart).

I saw a little girl in the park a while ago who had had complete transpostion and was very poorly at a day old when her duct started to close. She is 3 and was running around and very well .

Sorry, the end of that secomd paragraph should have been...until the definitive corrective surgery can be performed.

I crossposted with you babyalfie. The fact that they are trying to make a plan is very positive. If there was no hope they would not be doing so.

In answer to the termination question, you can I believe be sedated or put to sleep for a late termination still on the NHS. I can't imagine how hard that is.

I'm so sorry you have had such worrying news.

I would suggest you need to find the right specialists to talk to to find out what the chances and risks are for your baby should you continue on with the pregnancy and treatment for him before you even start to make a decision here about this. It sounds like there are a lot of questions you need answers to and I think you need to find these answers, even if it takes several opinions before you feel you have the right information to help you. I hope for you that the specialists think there is at least some chance they can help your son, and that everything turns out well for you both. Good luck.

Oh dear, babyalfie I hadn't read your last post before I posted so sorry if it seemed insensitive.

I agree that if they are trying to make a plan then that is in itself positive. I would wait until you know more before investigating termination options further tbh.

Huge sympathies to you - I've been there. Please don't make any quick decisions. It's a huge shock to find out at the anomaly scan that your baby has a congenital heart defect - it's ghastly, it's stressful, it ruins the rest of your pregnancy and means that you are permanently anxious about your baby both before and after birth - but children's heart surgery these days is amazing. Really - they can fix the most complicated defects, if your baby is treated in a hospital that specialises in children's hearts, and by a surgeon who's an expert in this kind of surgery.

My DD2 was diagnosed prenatally with an atrio-ventricular septal defect, and other heart problems. She's had surgery, and her heart is now fine. It's a whole new world, having to deal with specialists, intensive care, surgery, the whole thing - but babies with heart defects very often do well. I know of quite a lot of children who have had surgery for transposition of the great arteries a week or so after birth, who are now well and thriving.

So please, I advise three things:

1. Don't rush into a termination because of terror about heart problems - even very complicated problems can be corrected after birth. The health professionals will be telling you about termination to let you know what your options are - but they aren't telling you that it's what you should do, or that your baby's case is hopeless.
2. Try to find out if the hospital you are being seen at specialises in the type of surgery your little boy will need - and if it doesn't, try to get a referral somewhere else. With complicated cases, you can go anywhere in the country - it'll be logistically complicated for you as a family, but going to a hospital that specialises in the surgery your baby needs gives the best chance of a good outcome.
3. Do ask if the doctors treating you suspect any other problems with the baby. It's quite often the case that children with septal defects have other problems too (often caused by chromosomal abnormalities) - not meaning to worry you, but just to give you an idea about other questions to ask. It'll also help you make a rational decision about whether to continue with the pregnancy.

Thinking of you. You are not at all silly to want to give your baby every chance of survival - you are a normal mum. Will you post again to let us know how you are doing.

just wanted to offer my sympathies to you - I'm also diabetic and I didn't know I was until the GTT test at 15 weeks (I have lifelong diabetes they say, not GTT, and would have had it for the past year or so), so we were terrified at our 20week scan last week. we've been incredibly lucky in that they haven't found anything, but my heart really goes out to you, truly...thank goodness you've got your mum on hand as well. Take comfort from the other stories in this thread of children who have heart 'defects' or problems, who have come through it fine, I know you can't help but worry but like someone else has said, they wouldn't be coming up with plans for you if there was no hope. All the best, I'll be sending you every positive thought in the world.

GD i meant (mispelling above) for gestational diabetes, sorry

I am so sorry to hear this news, but don't worry too much. So long as the heart is working/ beating in the womb, which obviously it has been doing than there is hope. We live in an age of amazing medical technology and there have been incredible miraclous operations performed on new borns and they have turned out fine.

You are half way through your pregnancy so they have plenty of time to think about how to help your baby. I wish you and the baby all my best.

www.heartline.org.uk/

There is a very good message board there and there will be people who have been through something similar

xxx

Sorry you're feeling scared and worried - just wanted to give you an encouraging story to show that it need not be as bad as you fear. I have a very good friend whose baby had serious heart defects that weren't spotted at any of the scans. only found out about after birth. She had surgery at 7 months and now is like any other baby, apart from being a little bit smaller, but she's catching up so fast - it's a miracle what medicine can do.

Hi there thanks so much for all the help I appreciate it so very much.

It has taken all the looking forward to my baby out of the windoww but I want to giv him a chance of survival.

I want also to have an amnio as like sombody posted I know it can be related to other health problems and if this is the case then I will then have to think about termination.
I also feel that being so young people have wished this to happen and now they have got there own way.

I am due to start my nursing October but before I knew about the condition the people that interviewed me said I did so well they would either defer me for a year or would work around me and the dates etc and for my mother and the hospital creche to look after the bay for 3 months.

I am so scared and mixed up and do you really think on Wednesday they would have told me if there was no hope at all. My mother rang the unit up yesterday and they say it is very very major and termination will be offered on Wednesday but honestly i want to give him chance of life even if slim.

hanks so much all of you taking time to reply.

I honestly believe that no one will have wished this to happen Everyone will be sad for your and your baby.

Hope the time passes quickly between now and Wednesday

There are no easy decisions to make, you need more information and more time. Whether to continue or not - neither is an easy option.

Be kind to yourself and make the decision that's right for you.

Babyalfie

At twenty weeks all your baby's limbs and organs are pretty much fully developed and now he just needs to grow. His sex is determined and he is able to swallow and as you know his heart is working.

There is no reason not to let your child have a chance in life and I am sure when he is born and after all the treatment he will receive you won't regret for a minute letting him live and you will love him so dearly.

Seriously don't give up hope on your child, you'll be surprised what babies can live through.

Having been through this myself the best advice I can offer you is to get as much information as possible. Write down all the questions you've got between now and Wednesday, even ones that seem silly or trivial - otherwise you'll forget them on the day or remember just as you walk out of the door. Then write down their answers as much as you can, so you can think about them later - you can't possibly think about it all at once in the appointment.

Ask things like:

• what can be done about this condition? what sort of treatment would it be, what are the chances of survival with the surgery, what other effects might there be on the baby from the surgery?
• what about long term effects, might the baby need more treatment later on in life?
• if the treatment/surgery is successful, would the baby have a completely normal life?
• can they do the surgery where you are or would you have to travel somewhere with the baby?
• are they sure about the exact condition and about how severe it is, is there any room for error, might they have got any of it wrong?

Don't think about anything beyond getting all the information you can, deal with it one step at a time.

In the meantime, try to distract yourself - rent a DVD and curl up on the sofa with some popcorn and chocolate, and let everything else just pass you by for a bit.

Sending big hugs

xxxx

Poor you -shocking news. Do not give up hope yet . I am not an expert but I do know families that have had bad news about the heart and have gone to term, the baby has had surgery and has grown to be a very gorgeous healthy baby.

If things are worse than you hope and the baby has more complictions and you do feel that a termination is the option, there is another topic under pregnancy called ,ante-natal testing and choices, - there are women there who have agonisingly chosen to terminate and will offer you endless support.
Try and rest and distract yourself.
The waiting is agonising.
I hope you have caring and supportive people around you. It sounds like your mum is amazing.
good luck love