Pregnancy after CHD

OK- so I have NO idea where to post this. Please move it if there's a better spot. It wasn't right to post in pregnancy after loss but I think some of the emotions are similar.

So most of you know that my DS was born with a serious heart defect. He was in heart failure at 9 days old and has had two open heart surgeries at 2 weeks and 6 weeks. It was the worst time of my life. I think I had some residual PSD after our time in hospital and I still have flashbacks from the ICU.

Anyway, I am pregnant again. 9 weeks or so. Don't get me wrong, hubby and I are super excited to be adding to our family. It was a surprise pregnancy but ABSOLUTELY wanted. Most of the time I am fine and happy thinking about pregnancy but sometimes I am absolutely petrified there is something wrong. I can't imagine going through that again. Twice we were told to say goodbye to DS, no parent should ever face that. I am so scared that I'll have to face it again.

Those other mums who have had sick babies and pregnancies after. Are these emotions normal? Did you feel this fear? Please tell me I'm not horrible for not 100% enjoying this pregnancy.

:hug::hug::hug:Lots and lots of these hun.

Hi glenny, firstly, congratulations on your pregnancy!

My DS is my second child. At my gross morph scan at around 21 weeks, we were told that he only had a single kidney and that that kidney appeared to be 'non-functional' and that the pregnancy was 'not viable'. It was advised that we terminate the pg. I couldn't face the prospect of a termination at that stage of pg and DH agreed. I made the decision that I would prefer to carry to term and birth a still baby than undergo a termination at 22 weeks. We were advised that the kidney's do not function until shortly before delivery as the placenta does the job until then. It was expected that DS would survive until shortly after delivery. Neither dialysis or transplant was an option.

As you can imagine, I was stressed beyond belief. I cried every day as I felt my little boy kick around in my stomach. I had regular US's and a few weeks before delivery a blood supply to the kidney was found and we were told that it 'might' function. During DS's delivery, the midwife was telling me to push and I just couldn't because my brain was telling me I had to keep my DS inside, where he was safe. Eventually, my body took over and I delivered my DS. He was pink and chubby and perfect. He is now 7 and it has been a bumpy and stressful road, but his single kidney (although it is quite abnormal and we have had some problems with it) does continue to function. I, not surprisingly, struggled with PND.

We had a gap of 5 years between DS and DD2. I knew I wanted another child but I couldn't face the prospect of another pregnancy. What if something went wrong again? We had lost our naivety. Instead of something joyful, pregnancy became something to fear - a dark place full of sadness and worry. But my desire for another child outweighed my fear. We wanted a child for the child's own sake, but I also wanted another sibling for DD1 so that... well, so that if DS's kidney fails and he doesn't survive she will have a sibling to share her load with. Such a terrible thing to contemplate, but that's the honest truth.

It didn't take long to fall pg. I was excited - and terrified. I cried a lot. Made a lot of deals with the devil... 'if this baby is ok, then I will...'!! We had our 12 week scan and all looked good, but all had looked good at DS's 12 week scan too. I reached about 15 weeks and I realised that I couldn't continue that way. My fear was spoiling what would likely be my last pg. If I didn't lower my stress levels, I think I might have stroked out!! I was snappy, teary... miserable. It wasn't what I wanted and it wasn't fair to my kids. They were old enough to understand what pregnancy is, and I wanted pregnancy to be something joyful to them, not a time for a woman to be miserable. it should be so exciting and incredible, this growing of a new baby. So I made a conscious decision to change my attitude. I forced myself to be happy. It's amazing, if you plaster a smile on your face, make an effort with your appearance and tell yourself that you are happy... you actually feel al little bit better. The other thing I chose to do is to accept that I could not change things. I can't fix DS's kidney, and I could only live in a healthy way to protect the baby in my tummy. That's all. I chose to accept that I could not control the outcome. Very difficult for a controlling personality like mine, but when I finally let go, it was like a weight had been lifted from my shoulders.

I was still anxious. I still had teary moments, over concern for my third baby and also the memories it raised of my pregnancy with DS. But I made the choice to enjoy my third pregnancy and accept that I could not control it.

I think what you are feeling is very normal. Tell people how you are feeling, surround yourself with supportive people. And make the choice to acknowledge your worries, but to enjoy this new experience. :hug:

Thanks Kazzo

Thanks Nickle730- I think for me it's fear of the unknown. All the scans with DS were fine. We didn't know there was any problem until we took him to hospital at 9 days with what we thought was a cold. He was in heart failure. I'm trying so hard to enjoy this pregnancy as much as I enjoyed my other two but it's so hard to block out the fear. It's not just me either but I don't want my DD to go through it again. She was only 17 months when her brother was born and she pretty much lost her parents for 9 weeks as we were sitting by his bedside in hospital.
I know what you mean about having another sibling for your eldest just in case. We always wanted three but it seemed even more important with DS's health that we have another sibling for DD. It's awfully morbid but I'd hate her to be left alone.

“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.

I don't know if the fear goes away.

Big hugs.

Congratulations Glenny!!

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. :hug: