“Lord, grant me the strength to accept the things I cannot change,
he courage to change the things I can,
and the wisdom to know the difference.”
glenny, I am not religious, but this quote really resonates with me. You cannot change the outcome of this pregnancy. Do the right things, live a healthy lifestyle and accept that you can't control the future. Enjoy the moment. It doesn't matter who you believe grants you the strength, the courage or the wisdom - all of those things are inside you.
Glenny there would be something wrong with you if you didn't worry about the baby's health after what you have been through.
How common is it for the heart defect to run in the family? I mean for two siblings to have it?
There is no reason this baby won't be healthy like your first child.
I've suffered from anxiety a lot and the one thing that helps me is to think about my circle of influence
Things YOU can control. Anything you can't control has to be pushed aside so you can function.
Could they look for it at 12 or 20 week scan knowing there is a risk?
Oh you poor thing of course you are worried, who wouldn't be?
Maybe that is why you've had a happy accident, the universe wanted you to have another baby but spared you from the big step of actually making that decision. Sometimes the universe is clever
I am not in the position you are but as you can see from my signature I have had some issues with both my babies and I also had the same defect as a baby. What we went through was absolutely nothing like you have been through (PDAs so not open heart and heaps easier to fix and recover from) but we did have those same questions of 'what if' and 'what are the chances'. Have you had a chat with the cardiologist about the chances, like actual numbers? Is it any more likely for a sibling or is totally random? I can't remember what our cardiologist said (after DD1) but I think it was about 1% for the general population and maybe 2-3 % for a sibling (which in our case was probably even lower because the condition often occurs with prem babies - so the prem-ness is actually the thing that runs in families, not the heart defect - and my girls were full term). Which really 2-3% is next to nothing really. I wonder if you have some of the numbers for your situation in front of you it might help to keep things in perspective?
Also talk to your care provider in pregnancy about what you can do. We did discuss having an pre-natal echocardiogram but of course a PDA doesn't look or act any different in utero so for us it wouldn't have show anything but it might be an option for you. I think that is normally done at the bigger children's hospitals (where you probably would have been with your DS). I have a friend who had a precious angel baby from heart issues (passed away at about 24 weeks gestation) and she had a pre-natal echo with her next baby, who was perfectly fine of course .
Other than that, no matter what fraction of reassurance numbers and pictures can give you, I'm sure it won't make the worry go away. Perhaps speak to people who have 'been there done that' and see if they can offer practical advice about how they managed it, because I imagine it is more a matter or managing it not eliminating it. I suspect HeartKids would have lots of members who have faced it, perhaps you could ask there?
Good luck with your pregnancy, I've really got my fingers crossed that things work better this time.
ETA - oops I realised I kind of got sidetracked there and didn't finish what I was saying about DD2, so it reads like I was saying the chances were really small but it still happened - yeah way to fill some one with confidence Sagres *facepalm* . After she was born and had the same defect we started some testing and we may have some really really rare genetic condition that no one has heard of and in actual fact our chances were 50-50 of it happening again BUT I can say pretty confidentially you don't have a genetic condition of that kind because there is no way in the world you or your DH would have had the same thing as your DS (to be able to pass it on to him) and now known about it. Just not possible.
Hey glenny.
As everyone knows DD had a birth defect, the chances were one in several thousand to get it in the first place, and if you have one child with it the chances are 1:5 to have your next child with gastroschisis.
That was terrifying. There were moments while we were TTC that I thought we should stop, but I wanted to have a baby so I could have all that I missed out on with DD. Natural birth, full term pregnancy, breastfeeding, not sitting in hospital for months.
I prepared myself for the worst, convinced DS had gastroschisis. And at my morph scan we got to see very very clearly that he didn't have the defect.
Things didn't get better from there, I was so scared he would die and have some other problem they hadn't picked up.
But, all is well. But, I cannot go through another pregnancy. It's just too frightening. I've had the big snip since DS was born, so that fear is now gone and all the nightmares have stopped.
Your emotions are all totally normal.. Each situation is different, but I have CHD and my Mum had 2 more with no issues. None of my 3 boys had any issues with their heart that wasn't related to prematurity.. I just wanted to give you some hope..
It is hard to enjoy a pregnancy when you have had a sick baby or other trauma. It's ok to feel what you are feeling.
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BUT I can say pretty confidentially you don't have a genetic condition of that kind because there is no way in the world you or your DH would have had the same thing as your DS (to be able to pass it on to him) and now known about it. Just not possible.
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