Baby has a heart defect

[Bean272021]

Hi, I need some advise , words of encouragement and support. I am 13weeks pregnant, during my scan they found that baby will has a Single ventricle heart and would need multiple heart surgeries. I am so torn apart , I am a first time mum and this has broken me down so much .
I am not sure if l would want to go full term have the baby , watch my baby in pain . I don't think I am strong enough.
Termination was the second option , am I wrong for thinking about termination ?

You are neither right or wrong, it's a very personal decision. I would suggest talking to your midwife and also look for forums where there are parents who have been through the surgeries - what is the long term prognosis is the question I would be asking, as much as it's horrible to see your child in pain, if it's short term that's different to long term disability. Sending you lots of sympathy and love, it's horrible - I've been in your position with a bad scan but turned out not to be serious thankfully but for 6 weeks of extra tests it was horrific

Oh gosh. I’m so sorry this is happening to you. You are absolutely not wrong and this is a very personal decision. What have the doctors told you about the baby’s likelihood of long term recovery etc? Are they likely to survive the heart surgeries and lead a normal life? Whatever you decide is entirely up to you and your partner and there is no right or wrong.

When the doctor told me my whole world just shut down , I didn't even ask many questions. I asked about the surgeries the baby will need , what life will be like for them and if the baby will survive . She told me , for now they don't know how the baby's condition will be like until his born and how strong the baby will be , it's a 50/50 chance , it's either the baby will pull through or not . This condition will come with a bit of delays in maybe speech , walking and other learning difficulties. The baby will have a heart surgery in the first few days of life , another one after 6months and another before the baby is five . I should prepare myself for all this and hospital stays.
I can't believe this is happening to me

Nobody at all is going to think badly of you for putting an end to this now and saving your child a life of pain and difficulties. Equally, nobody is going to judge you for going ahead with the pregnancy and giving this baby a chance. It’s such a burden to have on your shoulders. What does your partner think?

My partner and his family they don’t want anything to do with the me or the baby at all . I told him at 5weeks and he broke up and stopped talking to me . I accepted the fact that I was going to be a “Lone Parent” , But now with this heart defect it will be so much pressure on my own . I am a first time mum , 23years old . I moved to England few years ago to study etc , I don’t have family here just friends that have turned into family . I am praying for a miracle to happen , I had this anomaly scan at 14 weeks instead of 20 weeks , a part of me still thinks maybe the baby was tiny or the heart is still developing . Before I make the finale decision I will go to a private Echo for a second opinion if the baby’s condition is still the same at 20weeks then l will go ahead with decision. This is one that hardest thing to ever go through

Hi,

My son has a heart defect which is single ventricular and yes has had many open heart surgeries he's 9 this year. Happy to answer any Qs that may be of any help.

How was it mentally for you to go through this ? What sort of challenges should l expect with this condition ?

Hi,

I'm not going to lie, it was/is challenging at times. There was some real lows and touch and go moments. We still have these moments now as unfortunately there is no cure.

We had the right of termination right upto few weeks before birth. But not for one minute do We regret fighting for him. He has come so far and is doing so well! The staff doctors abs specialist have been and are brilliant! They do everything they can to help.

He's incredible little guy whose growing up quick. When you go through it all!

If they haven't already, ask to speak to the Cardiac Liaison Nurses. They have lots of information that can help and explain what to expect. There's also a lot of support on social media we are part of many groups, some really good ones!

Remember, your not ever alone there's other people out there that have been through and going through the same as you. All more than happy to help and support!

In regards to mental impact for yourself it was hard. Tbh when you go through it you just in a way get on with it.. it's only been the last couple of years I have experience PTSD from it. However as previously mentioned there is a lot of help and support out there!

It's shocking they don't want anything to do with this. There's no right or wrong choice to continue or not with the pregnancy it's a personal choice I am also in similar situation u have to do what is right for u and best for child for me I can't see the baby suffer. Who ever u decide there are lots of support x

When they denied my baby I honestly didn’t mind that much cause I knew I can manage raising the child on my own . My plan was when the baby is 6months old I go back to work and this was before the diagnosis. I fully understand the severity of my baby’s heart condition and I know I won’t be able to cope , go back to work as the baby will spend a lot of the time in the hospital for surgeries that l am not yet guaranteed they will be successful. I don’t want to see my child suffer or in pain , I won’t be able to handle it that will destroy me entirely and if l die who will look after my poor baby 💔. I hate being in this position and having to make such a decision it’s so unfair .

You are very strong and a wonderful mummy.