Bad news at anomaly scan

[IveBecomeSoNumb]

I had my first anamoly scan at 19 weeks, they couldn't get a good view of baby's fourth chamber so they rebooked us for another 3 weeks later. At this appointment they couldn't get the 3VT view. So they booked us in to see the cardiologist on the Thursday after.

When we saw the cardiologist he hit us with some awful news that our child has 4 quite serious heart defects. He has, double outlet right ventricle, pulmonary valve stenosis, ventrical septal defect (a hole between the two ventricles) and transposition of the two great arteries.

He recommended we have an amino to check for chromosome abnormalities also. We're awaiting the results of the chromosome test as well as another fetal echo.

We've been given two choices, continue with the pregnancy and wait and see what our boys like at birth or terminate the pregnancy.

His condition isn't likely to get any better, only worse as more issues arise after birth or more become clear. He'll be taken straight off me to have an IV put in to ensure his lungs can supply adequate oxygen to his body.

I'm so lost and confused at to what to do, we don't know what quality of life he'll have, if any. We're not sure what's best to do and I just feel so upset that my child may have to go through lots of surgery and there's no guarantee he'll survive these.

So sorry for your loss MovingForward. xx

I'm booking in for my termination tomorrow. I'm 23 weeks, we were told we could wait until the full genetic tests were back however after a phone call today we were told that wasn't possible. We've had to make such a rushed decision and I'm struggling with it so badly. I know he won't have a good quality of life, I know he won't be able to do things other children can but I feel I'm being so selfish in wanting to continue the pregnancy. He keeps kicking me and it's like he's saying I'm still here. I'm really struggling with this decision. I just can't cope.

I'm so sorry you're understandably struggling with this horrifically difficult decision. There is no "selfish" in these circumstances either way.

Thinking of you OP.

Thank you Catt. It's not an easy decision either way but I won't know if it's right or not.

My heart truly goes out to you op. Only you know if the decision is right for you and your family . If your baby is born he or she will change your life...and no doubt if he is never born then that decision will also mark a change in your life. I pray for peace for you. I wouldn't change my decision to have my ds for the world but despite the terrible prognosis antenatally he has a good quality of life. You are in such a hard position sweetheart. All I'm saying is despite all the amazing g technology sometimes the Dr's get things wrong. Sometimes all the medical knowledge in the world can't keep the "fight to survive agains the odds" factor that some little ones just seem to have . I know I am extremely fortunate in that I was able to bring my little heart warrior home. I also personally saw 3 mum's in PICU who so sadly did not get to take their babies home...and posters on this thread have experienced that grief too. I know we are complete strangers by chance having this conversation on the Internet but I pray for you and your partner and your family xxxxxxx

Hi, I have been where you are right now and big hugs for you. At our 20 week scan we discovered that our baby was missing the left side of his heart. Further scans also couldn't find an artery and several other things just didn't look quite right. We were told that a transplant or repair surgery would not be a possibility as there was nothing there to work with. We made the decision to terminate. A full post mortem revealed that although he was perfect in every other way his poor heart was a complete mess and if we had let the pregnancy continue he would have only suffered.
I still think of him every day and I will always pray for forgiveness for the decision I made but it was 100% the right thing to do.
Have a look at the charity little hearts matter they have a lot of good info.

IveBecome, Thank you, making this decision is never easy and however much time you have it is never enough, when we were talking to the cardiologists we asked what their success rate of that particular surgery was and though their answer was honest it was the deciding factor in our decision to terminate. It was a long time ago and we went on to have another child who is now a teenager.

My heart goes out to you. feel free to send a PM if you want to 'talk' privately. X

Sorry to hear about your loss TractorComes,

And thank you again HaveYouSeen, we rang the cardiologist again today and there's such a high chance he'll die after the first surgery and if by some miracle he makes that there's an 80% chance he won't make it past five. Hearing that's really put my mind at rest that I'm doing the right thing by him and my little family. Just heart wrenching really that I've come so far and will never get to take my little boy home.

My DD2 has HRHS and DiGeorge syndrome. She would have died very shortly after birth or best case scenario lived a few years in pain. We terminated at 16 weeks. It was the kinder option for her. We loved her so much we took the pain of losing her rather than her suffering. Stay strong, treasure the moments after birth. My heart goes out to you. We visit our DD's grave most weeks and I still cry for her even now we have a rainbow DD but I would do the same over again for her sake.

I'm so sorry to hear that from the Cardiologist but I hope it's brought you a little bit of peace.

I hope you have support around you. I truly believe you are making the right decision for your family even though it's heartbreaking & you must be in bits.

We're all here for you if you need to talk.

AGruffaloCrumble, so so sorry for your loss. that's how we feel about it all, we're trying to keep him out of pain and suffering. It's so hard where I'm so far along and he kicks me like he's reminding me he's still here.

Thank you again CattDamon

so sorry ivebecome.

i just wanted to add that at my sons 20weeks anomaly scan he was diagnosed with PFFD. Although not a life limiting condition it would have resulted in at the very least amputation and prothetic (with lots of ops to get him there) or relying on a wheelchair.

i couldnt face a termination although i never quite knew if i had made the right decision. sadly my son died of his own accord at around 24weeks but i didnt realise until a routine scan at 27weeks. i delivered him 2 days later.

if i could go back and take away those 7 weeks of worrying and torturing myself with whether i had made the right decision. i might have done.

just wanted to give you some support.

Thank you so much gingerbreadmanm and I'm so sorry for your loss.

I just feel so bitter that I'll never get to take my much loved baby home and watch him grow up as I have for my DD. I know I'm doing it for all the right reasons but it doesn't quite ease the pain of losing a much wanted and loved child.

It's heartbreaking it truly is but you will cope with it and in time become more accepting.

i recently joined and sands group and often find myself feeling lucky knowing my son had something wrong with him and what happened was probably the kindest thing for both of us.

my dn recently had a minor operation and the stress i felt prior to it about her being sedated and recovering made me realise how hard life would have been seeing my son go through so much worse.

There's nothing I can say to make you feel better, just want you to know that I'm so, so sorry and I'm thinking of you

It's ok to be bitter and angry. It's hard because it's difficult to know who to be angry at. It will get better. 2 years on I am thankful that I have my beautiful baby boy and he was part of our life for a little while. You have totally done the right thing and saved him from any pain. simba and sands charities offer a lot of help and comfort.

Hi OP
So I've been where you are and I'm so sorry
But I'm 10 years down the line, if it helps there is no right or wrong here I went with quality of life for Dc I had and Baby. I think about him every day and yes certain times of the year are hard, I didn't have anymore after as recommended against but I think it would have been better If I had maybe ? But here's the thing, I've done angry, I've done second guessing myself and all I know is I made the best decision I could for everyone with the information I had. I have a happy healthy family now , for you and hth xx

I'm so sorry you are going through this. It must be just awful but you must trust in yourself that you have made the best decision for you and your family and your lovely little boy. I hope you have lots of love and support around you over the next few weeks and months.

Hi op
in so sorry it's turned out like this for you
Your a strong woman and this is a hard horrible time I'm thinking of you and your family

Thank you all. ❤️

So sorry your having to go through this.
We also had heartbreaking news at our 20 week scan that 4 chambers of the heart could not be see & was transferred to fetal medicine unit 3 days later. It was them confirmed that our little boy has HLHS. We were faced with 3 options - terminate, carry on pregnancy with palliative care afterwards or opt for surgery. It was a really hard decision & no1 should ever have to face those.
Me & DH have decided to give our little one a chance I'm currently nearly 30 weeks.
I did go through the stage of wondering if it's more cruel to put him through this but seeing how well these kids can do gives us hope.
Sending you big hugs hun. Xxx