Congenital heart defect my fault

[Happyowl89]

Hi
I’m really struggling at the moment to come to terms with my newborn having been born with a congenital heart defect which was not picked up during pregnancy. We are fortunate because he has had surgery to repair it and is doing very well. The doctors have said to treat him normally.

However I can’t shake the obsession that his CHD is my fault. I say “obsession” because I have OCD and have a lot of cyclical thoughts. My OCD centres around safety and responsibility which further compounds the issue.

The reason I think it’s all my fault is because before I knew I was pregnant I had been in hot tubs on holiday. I also had Covid when I was 7 weeks. I feel convinced that either of these two circumstances have caused the CHD.

I feel devastated because in all areas of my life I am so careful, cautious and over worry about everything. For my first son I did everything by the book, it just so happened that DS2 was a happy surprise otherwise I wouldn’t have gone in hot tubs.

I have spoken to the cardiac nurses about this as well as a cardiac psychologist who was in my sons hospital. The nurse said it’s just random and not my fault, the psychologist focused more on “forgiving yourself” which doesn’t help.

I suppose I’m looking for someone to tell me it is 100% not my fault but I guess that’s impossible. It’s making me feel so low.

Any words of wisdom would be much appreciated.
Thank you x

Neither of those things would have caused a congenital heart defect

Firstly neither of these things would have caused a defect. Secondly you were presumably vaccinated and therefore had taken all steps to prevent covid - and even if you weren't vaccinated, covid wouldn't cause congenital heart disease.

My baby was born with a CHD and also had surgery at a few weeks old. While I was in the ward for heart babies I spoke to the surgeon pre-op and asked why my baby had this, was it something I did. I was really worried as I'd had a wine and sparkling water to toast my birthday and I'd been to a couple of loud music gigs whilst pregnant. He said, 'look around the room, all the mothers in here are from different backgrounds, different cultures and lead different lives. Heart defect are common and random, there is nothing you did and 100 years ago your baby would have been weak and possibly not survived even birth but we know what we doing now, your baby is safe and he is going to be fine'. I cried and his words have stayed with me forever.
Enjoy your baby, you're a brilliant mum - stop worrying

I suppose I’m looking for someone to tell me it is 100% not my fault but I guess that’s impossible.

That's what the cardiac nurse did it’s just random and not my fault

The psychologist gave poor advice - theres nothing to forgive yourself for.

I think your rational brain knows it's in no way your fault, but me saying that won't help you so let's look at hard evidence:

1. Hot tubs are recommended against because of a small (and quite tenuous) increased risk of neural tube defects that correlates with repeated use. Your baby does not have a neural tube defect. I can see no evidence anywhere of a link between hot tubs, fevers, hot baths etc and heart defects. Here's a piece on the (small) link which spells out that there's no evidence of a link to cardiac birth defects.
2. Getting Covid? Not your fault, for starters. It's a massively infectious disease.
3. Even IF you had gone round licking used positive LFTs trying to get Covid, the evidence of any link between Covid and heart defects (or birth defects full stop) seems to be vanishingly small, if it exists at all. Give the millions and millions of people who've had Covid, that also provides some reassurance.

Now with my empathetic side - I had a child with a birth defect and I know how terrifying and stressful it is, and how you second-guess everything you did in those nine months. But ultimately growing something from two cells to a WHOLE HUMAN BEING is a mind-bogglingly complicated process, and sometimes things just go wrong. They just do, and we have to pick ourselves up and say 'hey, this happened, we're the people it happened to' and do our best for our kids.

You’ve done nothing wrong, of course it’s not your fault.
My 18 yr old DS has a CHD but he has a twin who doesn’t, it’s just one of those things.
Forget the past and concentrate on the present and future 💐

I looked after my friends child who had a cough even though I knew I was pregnant by that point. I didn’t want her husband to have to cancel going to work so I went ahead with the arrangements to look after her. I feel awful that I put someone else’s needs before my pregnancy

My DD has a CHD. I was super strict about everything in pregnancy and she was also born deaf!

Even if you did cause it what good will come of feeling guilty? Please seek better help OP and enjoy your beautiful baby

The proven risk factors of CHD are: genetic, type 1/2 diabetes before pregnancy, medicinal, smoking, alcohol, or rubella. A cough / cold does not cause this otherwise most kids in the world would have it. Strongly suggest you speak to your HV to be put in touch with the mental health team - they can help you with counselling.

"he has had surgery to repair it and is doing very well. The doctors have said to treat him normally"

Just focus on this. You'll never know the causes and reasons, so just focus on the outcome. He's fine

I had a premature child who went on to have neurodevelopmental issues and other health problems. There is a link between some of his conditions and prematurity.

I work in a really stressful job, but was also really junior. I had spent the weekend working and went into Labour on the Monday (I had had some stomach pains on the saturday which I decided not to go to the labour ward for because I thought they'd keep in for hours and then I would not have done the work which needed to do for Monday).

Despite working these hours to pay the bills, I felt tremendously guilty that the premature labour had been caused by my actions.

I mentioned it a couple of times to my OB in my next pregnancy and I remember at one appointment he told me I had to stop being so hard on mysel. He explained if it was as easy as saying, "stressful job = premature labour, or premature labour = Neurodevelopmental issues" it would make a lot of doctors lives a lot easier.

Things happen. You can do everything "right" in terms of following guidance in pregnancy and your child still has disabilities/health problems it's just the way it happens.

If kids with coughs caused heart defects we'd know about it because most women having a second baby have to look after their first child who will almost certainly have illnesses while they are pregnant. Most people tend to have a 3 ish year age gap right? 2-3 year olds are gross but their siblings are usually born fine.

You sound like you are very stuck on this idea that you caused this defect and you know that this thought isn't helpful and is becoming very distressing.

Several PPs have explained the risk factors for heart defects and none of them apply to you so here are 100% of posters telling you its 100% not your fault. Some of these people have even included objective evidence. If this isn't enough to change your perspective, then perhaps it would be worth accessing some talking therapy to try to break the cycle of unhelpful thoughts you are having.

I think (hope!) that rather than forgiving yourself when there is nothing to forgive the psychologist maybe meant that you should be kinder to yourself. If you can, maybe try thinking about what you would say to someone you love who was in your position, I'm sure you wouldn't think it was their fault or blame them the way you are blaming yourself.

IIRC, most of the major cardiac development is done by 7 weeks - the Covid won’t have had anything to do with it.

Ok, but you also know that out of the many, many pregnant women who've had Covid, heart defects haven't been thrown up as a potential result. So - your friend's child had a cough. You got Covid. Might have been from friend's child, might have been from somewhere else. But ultimately you can be as sure as anyone can be about anything Covid-related that it didn't cause this.

Nothing any of us writes will ever ease your mind.

I think my cardiologist said 1% of babies are born with a CHD.
It is not your fault. If you are on FB there is a very good group for parents of children with a CHD. I can link it for you if you would like it.

My teen daughter has a CHD , as do i and my mother. My cardiologist said there is probably a faulty gene in our case. I do not feel guilty, my daughter will need surgery and she is on some exercise restrictions but she lives a full life.

Cardiac surgery has come a long way since i was born and contiues to have great advances.

I want to give you a hug and tell you this isn't your fault but I completely understand how you are feeling. I was 13 when my 16 year old sister died of a congenital heart defect. It was a long, long time ago now. My mum never forgave herself, believing it was her fault. She had mixed with someone who had German measles, she nearly miscarried, you name it, she attributed the blame, any blame to herself. My wonderful, lovely mum spiralled down a very dark path which ultimately ended her life. In retrospect, I think it was a PTSD and I wonder if you have something similar.

A number of years later, my 12 year old daughter collapsed at school. It was found she had a similar condition to my sister. I couldn't cope. I foresaw it all happening again. I blamed myself, why wasn't it picked up on scans etc, what had I done to make this happen. However, her surgery was very straight forward. Medicine had moved on so much! She is now a wonderful, healthy, beautiful 18 year old. As time has gone on, I have had the opportunity to be reflective on this. It wasn't my fault and it certainly wasn't my lovely mums and yet these destructive thoughts have the power to have such detrimental effects. It is hard for you to accept that you aren't to blame but you must. If you don't you will constantly consumed by this and it will rob you of these special, happy years. We also have an older daughter who has required extensive surgery, I completely understand.

As parents we try and protect our babies and feel guilt at the drop of a hat. But we need to accept what is not within our control otherwise it will eat us up. I miss mum mum, I feel guilt that I wasn't enough for her, but it was a long time ago. There are counselling services now, I think it might help you. Sending lots of love xx enjoy your baby x

It’s natural to blame yourself but you did nothing to cause it. These things tend to be genetic in nature and can skip generations meaning you might not even know it’s a family thing. This is information my cardiologist told me as I have an issue myself. Sometimes they are also completely and utterly random. My little girl had a health issue not heart related, and to this day I blame myself with no good reason. Sometimes you just can’t help doing it even though really you know it wasn’t your fault at all you can’t shake off the guilty feeling as though it was!

Hi everyone
It’s been a few weeks since I first posted my message and I haven’t replied yet. I just want to say thank you for all the thoughtful and detailed replies - they helped me so much and I still read them back now when I’m having a wobble.
Thank you all xx

@TeddyOBear I lost my mum to mental health issues four years ago. I’m sorry to hear about your mum, it’s not easy xx

Bless you, it's absolutely horrendous. I really hope things are improving for you x

I was born with a congenital heart defect and had open heart surgery when I was 2 years old.

my mum had taken an anti morning sickness drug (not thalidomide) but patients have had compensation in USA for defects resulting in taking the drug.

I do not blame my mother at all.