Suspected Heart Abnormality

[Bean272021]

Hi ,
So today l had my 11-14 weeks scan /Nuchal . I am currently 14 weeks . The chromosomal abnormalities came back low ( less than 1 in 500) , the Fetal Anatomy all was normal expect for the Heart . The lady doing my scan suspected something was off with the baby's heart . However the baby was facing down the whole time and refused to move 💔. I have been referred to see a Fetal specialist tomorrow or Thursday or sometime this week .
I am so stressed out , I can't even eat or stop crying . I feel so heartbroken as l don't know what this will determine for my baby .
This is my first pregnancy and so far it's been so hard and I am trying to keep it together but l can't .
Has anyone ever experienced this before ? What can l expect on my next visit ? Any words of encouragement.
Thank you

Have you seen the fetal medicine department yet? Happy to share my experience but it didn't have a happy ending so understand if you don't want to hear it (we were one of the very unlucky ones, even if your lo has a heart condition most can be repaired). If not maybe this will bump the thread for you

Hey, my boy has Pulmonary atresia only the left side is developed and the right side is underdeveloped or smaller . I am 14weeks at the moment and i am so broken . I now understand the Severity of this condition and how life will be like for my little one if he makes it . I don’t know if l ever want to go through that , watching my son in pain and not enjoying his life. I was given 2 options 1 to go full term and 2 to terminate the pregnancy 💔. I am happy if you can share your story with me , Thank you ..

I'm so sorry OP. My DC had PA, amongst other things but it was missed at antenatal scans. She died 6 years ago. Have you seen a pediatric cardiologist? Do you have other children?

I have not seen the Pediatric cardiologist yet, they have given me time to think about it and make a decision. This would have been my first child.
I am not sure if l really want to have my child and watch them suffer l can’t stomach it at all 💔💔

Was there a reason why you had the foetal anomaly scan so early? This is usually at 20 weeks. OP if you'd like to PM me I will tell you my experience, don't want to put much on here.

I'm sorry to hear that op, my situation was similar but dd's problem was with the left side of her heart. We found out later (23weeks). We did continue with the pregnancy as there was a chance that the left side might develop further and they'd be able to do a repair that would have resulted in a bi ventricle system but things were quite complex and she died shortly after birth. I don't regret continuing but probably wouldn't have made the same decision if we had a similar diagnosis during our next pregnancy. She was our second child and wouldn't have risked putting our oldest child through it again.

I know you say you haven't seen a cardiologist yet, have you had a scan at a specialist cardiology centre yet or just at your local fetal medicine unit? Our diagnosis changed subtlety once we were scanned by the fetal cardiology unit. I would want to speak to fetal cardiology before coming to a decision, they should be able to give more details into what operations might be necessary and what quality of life might be like. It's still relatively early in your pregnancy, both for having to make a decision on continuing the pregnancy and for seeing details in a scan. In my subsequent pregnancy fetal cardiology didn't scan me until 15 weeks.

Have you been given any numbers to call? Arc are supposed to be good for advice. Tiny tickers, heart line and little heart matters are all specialist children's heart charities. Little heart matters are focused on single ventricle conditions. Baby centre used to have a dedicated heart conditions board. There is also the pregnancy choices board on here which has knowledgeable posters that have had tfmr if that is the decision you come to.

The other thing to consider is a cvs or amnio as a chromosome condition can make things more complicated

I have decided to get a second opinion from a Private Echo specialist. I went to Harris Birthright Centre I found the doctor to be not informative at all and all she did was scare me and I was given a number to call the midwife. I still feel like at 14weeks it’s just too early to make such a complex diagnosis, I will allow the baby some time to develop , the doctor did say the right side of the heart was underdeveloped compared to the left . I will just wait a little longer till I am 20weeks , get a second opinion then make the decision . As for now I will just pray for a miracle, I hope by then the other side of the heart will develop more .

It’s not easy to go through this , for the first time in my life l felt suicidal. I wonder what my life will be like after this , where do l go , how to I start over . I dream about my baby a lot , I wanted to be a mother so bad and just to have this moment taken away from me it’s hard to accept . I want my baby to have a good quality of life , I keep blaming myself maybe it’s something I done or I am being punished for my sins .

I promise you its nothing you've done. The major structures of the heart should be visible by 15 weeks if you are reasonably slim (so I was told) but you need advice from a specialist, which is unlikely to be in a private setting I would have thought. The scan should be carried out by a cardiologist, or reviewed by one, who will be able to tell you likely treatment plan and quality of life, though diagnoses can vary slightly once baby arrives.

Exactly what Mrsbrowns says. You need to see a cardiologist. The harris Centre looks like it's part of King's? Have you spoken to your midwife or the midwife they told you to phone? I would have thought either the Harri Centre or the midwife should refer you to a fetal cardiology centre (probably the evelina at St Thomas's who are excellent). They will probably be able to scan you within the next week or so (from 15 weeks is typical although if the pregnancy continues you'll have additional scans). They are the best people to talk to as they deal with heart babies everyday. This is not your fault. Up to 1 in 100 babies have a chd.

Thank you so much you guys have no idea how much just sharing and talking to you all has made me feel .
I will take your advices and call the midwife on Monday and ask to be referred to a Fetal cardiology for a 2nd Scan / 2nd opinion . I think having a another scan / 2nd opinion will make me feel less guilty with which ever decision l make moving forward .

Hello, my daughter has pulmonary stenosis and hypoplastic right heart syndrome. Her right side of her heart is very small and muscley, snd her pulmonary val e was very narrow. I was offered a termination at my 20 week scan as they said she only had a 30% chance of making it to school age. We were devastated but after lots of thought we decided to go ahead. My daughter is now 15 and unless you know her you'd never know she has a heart condition. She was in hospital for 6 weeks when she was born and had her pulmonary valve ballooned 2 times before the age of 4, then when she was 8 she had the 'amplatz' device fitted which was the best thing for her, she went from blue lips to pink lips. I'm telling you these things because we honestly thought having a heart baby would be awfully difficult, that she would be ill all the time etc, but honestly she's amazing, she's just like any other girl her age, she just gets out of breathe easier and can't push herself too hard when doing physical activities. I know not all heart children are the same, but I wanted you to know that it won't necessarily be the worst outcome for your baby. All the best

That's wonderful, littlebird. I think the amplatz may not be able to be used with pulmonary atresia though.

Little bird : I am happy to hear some positive news. I will just give myself sometime to think about my finale decision as I know this won’t be easy..