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.

I'm so sorry for your news. One piece of advice someone gave me once was

'You will never regret having your baby, but you might regret not having them'

However my reasonings were a lot different to yours. I just didn't want to read and run xx

Thank you PinkPearls, I just don't want him to suffer. It would also mean a lot of time away from my DD too, which at 2 she won't quite understand and how would I explain if I had him and the worst happened? xx

I'm so sorry, I can't imaging what you're going through If I was in your position I wouldn't be able to go through with the termination, however only you can make that decision and you have to do what you think is best for the baby, you and your family

Sorry about your bad news
I suggest you contact Arc, I've heard very good things about them. They offer impartial information, advice and support for parents in your situation x

Oh you poor thing having to deal with that news and that decision. Hugs and kind thoughts to you.

I have no advice other than to reach out to people. I know from a friends journey that there are some amazing organisations that can help you with what you're going through with no pressure and no judgement.

Have you seen this organisation? ANTENATAL RESULTS AND CHOICES (ARC) Information and support for parents throughout antenatal testing and when a significant abnormality is detected in the unborn baby. (Formerly called SATFA) www.arc-uk.org

Hello, I too had bad news yesterday, I'm 22 weeks pregnant, and the baby is my third, my first child had an operation and the prognosis was fatal without ( not heart related) and was told not to expect much, she is now 11 and fine and scarily bright. I was told yesterday that this baby also has VSD and possibly a narrowing of the aorta which will require an operation within the first few days of life if that is the case, the VSD is in a place that is unlikely to close on its own, the prognosis is good for us but worrying, I have declined the amnio due to what happened with my daughter. I understand the explaining to your child if the worst was to happen, mine are eight and 11, and we've had to tell them the baby is ill, one is fine and the other worrying the baby will die but they are off an age where I cannot not tell them, but children are resilient. I really feel for you, and I keep alternating between being ok and complete fear as I am sure you are as well. I have contacted Heartline this morning and hoping they can help me with what to expect, perhaps they could help you? What hospital are you under? I was referred from my own to John Radcliffe, where my first had their operation that has helped me. I hope you are ok x

Also if it helps, my first had her operation at two days old and was on paracetamol by day two, she is also the most ballsy and tough child I know, and rarely ill but I totally get where you are coming from either way and can see what an awful decision it is to make, I've now been there twice and it is horrendous, my thoughts are with you.

Sorry to hear this OP. I second phoning ARC - they helped me so much in my pregnancy.

You could also consider looking at the Antenatal choices board, if you feel it would help to chat with others in a similar situation x

Hello op
Similar to you at my 20w scan the sonographer couldn't find the right ventricle it was like my dd didn't have a chamber so we were referred to fetal cardiologist.
It was then found she did have a chamber but the muscle around that section of heat was much thicker than you would expect.

We were scanned fortnightly then and discovered she had 3 VSD including one very large one which is in a funny position and will not close without surgery
She also has pulmonary stenosis and leaky valve.
We were offered an amnio and I declined as I would have had her regardless so when she was born they did full genetic and chromosomal checks and she was found to have no chromosomal issues at all. There was a small abnormality in the genetic tests which showed a duplication in her dna but this has been described as "of little or no consequence"
She was born and a neonatal Dr was on hand for delivery. Had natural birth no problems she was taken to NICU and they were happy with her allowing her back to me after a few hours.

At 4months old her oxygen levels dropped though and so we went to hospital and she had keyhole surgery to open up her pulmonary artery to allow more oxygen to flow and she looks amazing... you would never think she has a heart condition. She reaches all her milestones and is a happy chatty wee lady
There is many of us out there and the life in children's hospitals is like one you never knew existed it's amazing

My thoughts and my heart truly goes out to you op...I was in a very similar place to you ....in my 3rd pregnancy it 2as discovered that my baby also had transposition of the great arteries , many "holes " in his heart and also showing markers for Edwards Syndrome. We were told that if my baby had Edwards syndrome it was "incompatible with life" their words and they recommended a termination. For me it was a no-decision decision if you see what I mean? I remember sobbing after the scan and saying I just need my baby to be born. That's all I can remember saying. My lovely little boy is here- he is 2years and 3 months old. He is the joy of my life. Don't get me wrong we have had a hell-ish journey to get to now. We spent the first 4 months if his life in intensive care. He was ventilated for 3 of those. He had many many complications and infections. I never thought I 2ould bring my baby home but at the same time I always felt so very blessed that he had come as far as he did. I carried him, he was born, the days of his life were precious. I also had 2 other little boys who were 6 and 4 at the time. The hospital was over an hour and a half away and being separated from my children, my husband and my family was incredibly difficult. But we all survived. Our family is different now with my smallest little bird. But I wouldn't change it for the world. He's my heart warrior and is truly a very special little boy. I know what you are going through.... it will be OK. Your decision ultimately and I pray for peace fir

I'm so sorry this has happened.

I know someone who had similar news and how she made decisions. What seemed to help her decide what to do was getting a picture of the likely first 2 years of life. What were the issues to be dealt with, what the scenarios were, including success rates for procedures, quality of life etc. She saw a consultant in London for extra opinions & scans. Best of luck.

forever

Forever and Pego, you have just helped me with telling your experiences, so thank you.

Wow I'm overwhelmed by the kind words and well wishes at such a difficult time, thank you all so much.

And a big thank you to those sharing their experiences. I think I need to see the cardiologist again to get a better understand of what those first 2 years may be like. Then make a decision based on how that'd affect my family and my daughter. I'm being seen at St Michaels in Bristol which is right next to the children's hospital, so we had a nurse pop over from the children's ward to give us an understanding of what we may have to go through. Sorry I'm not personally replying to each and every one of you, I can't quite focus atm. Xx

This is a good place for you to talk OP, you will get lots of people who have great advise.

Take care of yourself and make sure you eat. I know worry and stress is awful but you must look after yourself. Everyday try to do one positive thing thats 'normal' for you. Look forward to the end of the day when can do 'that thing'. Even if it's as small as enjoying a biscuit dipped in your bru...having a giggle with your DD, all things like this will get you through.

Your in my thoughts

Obviously this is very shocking news and you do need a lot more information. However cardiac surgery in children has made huge strides in the last two decades and they can fix things now which would have been much more challenging a few years ago.

I once saw a documentary about the cardiac department of Great Ormond Street. Once message that came across loud and clear was that, although medical advances have allowed babies that would previously have died soon after birth to survive into childhood, these children are not "cured". There was a young boy who's spent his life in and out of hospital, having repeat operations, not able to do much physically or go to school because he was so sick all the time. He passed away at the age of ten. One of the doctors said that this was a real ethical dilemma.

I'm not saying this in an attempt to persuade the OP to terminate of course, but sometimes the most loving thing you can do is spare your child from suffering. But first you need lots of information and answers and a real idea of what the prognosis is.

I'm really sorry that you're having to face this

Thoughts and prayers with anyone facing this challenge in their life right now. And I second what someone said earlier - never ever have I come across the love, the peace, the compassion,,the bravery, the literal heartbreaking moments if life but also such incredible humble hope as I hexperienced in our months in PICU at Glenfield hospital. It truly is another world that you have no idea even exists until you are plunged into it and keeping your baby alive is the only thing that matters.
(((Also Northern lurker I think I know you - it's Pussycatmomma😉☺we were on ttc threads together about 8-9 years ago!!!!!!!!!))))

No I've never been on a ttc thread. I was on April 07 post natal though?

Hugs, I'm in a similar place to you buy a few weeks ahead. Our baby has been diagnosed with complete AVSD and the artery swop. It's highly likely that she has downs as well, we'll get the results back in a few days.

It's horrible isn't it. You go from joy over the pregnancy to fear and confusion. I found ARC helpful, and as we're being seen at Evelina, they've got their own charity to support parents and children with heart problems, which is good peer support.

We aren't going to terminate, but I can totally understand why others should in the same situation. We're very worried about the impact on our dd, little things like this Christmas will be totally different.

I hope you have lots of support and best wishes xx

Thank you again all for your kind words of support and real life stories.

We had a similar decision to make during my 2nd pregnancy, dating scans were then done at 16-17 weeks and that was when 2 heart defects were discovered Hypoplastic left heart syndrome and the apex of the heart being in the wrong side of the chest, an appointment at a fetal medicine unit was made for the following week where more detailed scans revealed a severely enlarged aorta, after a long discussion with 2 Paediatric Heart Surgeons it was agreed that we would return 2weeks later for further scans to check on blood flow and to see whether the left side of the heart had developed at all, we asked many questions and some of the answers pretty much left us feeling that there was little hope of survival beyond the first 2days, at this point we were well aware that our little one would need 3 rounds of open heart surgery, one at 2days old and the other 2 before the age of 5. At our next meeting the scans revealed that the left side of the heart had not developed at all and because of the position of the heart then surgery would be more tricky and a 4th defect was subsequently confirmed. The 4th defect would have led to insufficient blood flow to the brain and therefore brain damage.

DD was 3years old and would have started school about 6weeks after my due date, I would have needed to spend a long time at a hospital many miles from home with a very poorly baby. All of these things were considered very carefully.

I don't regret the decision we made but I often think about it.

So sorry to hear you've had such a difficult experience HaveYou

Hello OP. Like HaveYou, I was given the diagnosis of HLHS at 20 weeks. It was our first child and we decided to progress with the pregnancy. He spent his first five weeks of life in ICU and sadly never came home with us, and I only tell you this in case you would like to get in touch at all to discuss the realities of surgery in the first few days. Much love X