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Expecting after son passed at 3m/o

Raunni13Raunni13 member
in Late Term and Child Loss
My son passed away 3 months ago and was only 3 months old. He was born with HLHS, a severe heart condition. I feel so much guilt because I felt like I could’ve advocated for him more in the hospital and prevented his passing. Now I’m terrified more than ever to have another child with the same heart condition. I just found out a week ago, and according to my last period I am only 5 weeks. I’m staying healthy, but in the back of my mind I’m so scared. I can’t go through loss again or want to see another child so through what my son did.
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Re: Expecting after son passed at 3m/o

  • 00kim0000kim00 member

    I'm so sorry for the loss of your precious son. Have you been seing a therapist? That can help with the guilt... I'm sure you did everything you could with the information and abilities you had at the time. It is not your fault the he didn't survive. You may know that on some level, but therapy can help get from that basic knowledge to really believing it.

    For your next child, have you considered genetic counseling? That can give you more information on if the HLHS was a fluke or if it's something in your/your partner's genes, which may give you some peace. Your doctors will also now know to be on the lookout for this in particular during your ultrasounds. Chances are very high that this child will not have the same condition, but there are ways to check. 

    From my quick google searches, it looks like there are some hospitals that are very well equipped to deal with this condition and higher survival rates. If you knew in advance that this child has that condition, you could choose one of those hospitals and basically set up camp there, give birth there or nearby, and set up care at that hospital ASAP. Get in touch with them as soon as you know you'll be dealing with this, and get things set up. That might be choosing the hospital closest to you, choosing one near friends or family who can host you while you go through the surgeries, or choosing one that takes your insurance and is in a reasonable-cost area where you can get an apartment or long-term Airbnb. None of this is to say you should have done this with your son. These are options now that you know things you didn't know then, and nothing that you would've been expected to do or even think of with your son. 

    Most likely, this child won't have the same condition, and you'll have a healthy pregnancy with a healthy child. You'll probably still be anxious during the pregnancy (more reason to get established with a good therapist!), but chances are things are going to be okay. And if they're not, you're in a much better position now to be prepared. With your son, you did everything you could with the information and abilities you had at the time. Now, you have more information and can be better prepared, so EVEN IF this child has the same condition, you can do something about it now that you weren't able to do before.

    What happened to your son isn't your fault. You did everthing you could, and it really sounds like he was incredibly loved and cherished every moment of his too brief life. The fear is totally understandable, and both therapy and a "what if" plan may be helpful as you navigate this pregnancy after that trauma. Congratulations on your pregnancy, and I hope it is entirely uneventful!

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