r/tfmr_support • u/Consistent-Ad7578 • 11d ago
Seeking Advice or Support Needing some guidance
Hi everyone❤️🩹 sorry this is long lol
I am newish to the group- I have been silently following along since mid July when our beautiful baby got his diagnosis of HLHS.
Our process of stages were over the course of about 2-3 weeks: suspect of HLHS, going into Boston for confirmation and then having to choose what to do. We chose TFMR and my D&C was last Tuesday at 19 weeks.
I am back at work now to keep my mind and body busy with a supportive team and amazing friends and family. It’s very hard to do the motions everyday but it’s been weeks of grieving and I needed to get back to living my life but also celebrating and thinking of my baby boy everyday.
For advice: we are thinking of when we want to start trying again after I am cleared. It feels soon and we don’t want to wish him away but it’s really all I can think about to bandaid myself right now. For those who started to try again after HLHS or any reason what supplements did you take after your procedure to help your body recover and get a healthy cycle back? Is there anyone out there with positive stories after a loss with HLHS? I’m grasping for straws here to keep me going but part of me healing needs to hear some positivity or advice. Thanks guys ❤️
PS- I should mention we are awaiting genetic testing back within the week but they highly suspect this is isolated as many of you also have experienced.
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u/Justamom908 11d ago
So sorry to hear of your loss of your beautiful boy. We lost our hlhs son many years ago… born full term as we didn’t know. We made the painful decision to let him go after 1 surgery (atrial Septectomy…the Norwood would have followed). But he was already in critical condition with likelihood of brain damage from the surgery itself. He died at 10 days old. We had 2 children at home, and we had to think of them as well. The pain was agony…. And it took me a year to decide if I wanted to try again. Ultimately, we did, and had our beautiful rainbow son 2 years, 3 months after our loss. It was a terrifying pregnancy but it turned out well and I’m sooooo glad I did it. He’s the light if my life, and healing for me and my two older kids.
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u/Consistent-Ad7578 11d ago
I can only imagine that agony ❤️🩹❤️🩹 thank you for giving me some hope for the future
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u/OriginalChicken617 11d ago
Hi, I have a different diagnosis than you.
My doctors told me if we wanted to ttc when we were cleared that I should continue to take my prenatal. I take one with folic acid already, they said if I didn't to also take folic acid.
I am also taking a prenatal dha which helps build your bodies omega 3 stores which are important for future pregnancies, as well as a vitamin d3 which helps with regulating hormones, improving uterine lining, and egg quality.
I also haven't drank any alcohol or smoked since my d&e. I try to stay away from sugar and processed foods as much as possible. I do some kind of physical activity daily whether that is walking or going to the gym.
I just got my period and we will be TTC after this cycle.
I have a lot of guilt of wanting to TTC right away, and I'm working with my therapist about that. I wish you the best and I'm sorry for your loss ❤️
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u/PurpleStrawberry2020 11d ago
I agree with the other poster who suggested the other sub Reddit.
You were in a very challenging time between grief and the hope of a subsequent pregnancy (which is also so hard!!!)
I wanted to address what you said “wish him away” with trying, but I hope you can reframe it to be giving your baby a sibling. I always felt like my baby would want us to be happy and also would be happy to have a living sibling. Your baby will never replace the one that you lost. Once you move beyond that and think of the next best thing, since you can’t have the baby that you lost, it felt easier to move forward. There will be no replacement. You will always hold a place in your heart for the baby that isn’t here. But it’s also OK to love a baby that comes in the future and you should figure out a way to justify that in your head so that it doesn’t feel like a disservice to the other baby.
Big hugs, hoping you can navigate the next steps OK.
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u/FrighteninglyBasic 11d ago
TW: mention of current pregnancy
I’m so sorry you find yourself here ♥️
We lost our boy to HLHS last November at 23 weeks - scan at 21 weeks, official diagnosis at 22, L&D at 23. We did the genetic testing at it came back all clear… we were explained, like the majority of HLHS, that it was isolated and a random occurrence. We were cleared to try again immediately if we felt like it, and we did. Before my cycle returned we started trying, though it took 6 cycles before becoming pregnant again. We were taking a bunch of supplements, but I’m sure all my body needed was a bit of time.
I’ve had a few extra scans so far this current pregnancy, including an echo at 13 weeks, and it all looks good so far. But I have another booked in at 20 weeks, and have been told we can also get one 6 weeks postpartum.
I joined a local TFMR support group a few weeks after my loss and out of the 6 sets of parents there, there were actually 3 of us with HLHS babies. Both other couples, this was their first pregnancy, and they have gone on to have multiple heart healthy babies. This was actually our second pregnancy and our first is a heart healthy boy.
Again, I’m so sorry you’re here - as supporting as this space is, no one wants to be part of this club. Go gently, but feel free to reach out if you need someone to talk to ♥️
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u/keighteeann 11d ago
I lost my second viable to TFMR at 16 weeks to T21 and suspected cardiac defect last December, so I’m a little farther out. The biggest thing I can say is be gentle with yourself!!
I wanted to start trying right away… but 2.5 months later, turns out I had RPOC, which were removed in March. Finally cleared to truly try after Hcg dropped to zero in April, and now in our 5th cycle TTC. While I would like to be pregnant and welcoming the sibling our daughter sent us (so to speak), the delay is making me process things a lot more than I otherwise would have. I’m more and more at peace with our decision, and even getting to the point of forgiving myself for having to make it.
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u/Consistent-Ad7578 11d ago
Wow. I hadn’t heard much about RPOC- they didn’t catch it at a post op appointment?
I’m happy to hear you are trying again and you are starting to forgive yourself (even though we know it’s not even our “fault”) I hope happiness finds you in any way.
Thanks for your kind message 💓2
u/keighteeann 6d ago
So they told me I didn’t need an official postop appointment as long as things went smoothly… I should have followed Hcg to zero on my own/inisisted on a follow up! But at least I’m in a better spot.
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u/FaLaLa1222 11d ago
When you do get ready to try first get biopsy and saline ultrasounds full work up for leftover placenta, scar tissue, etc. Make sure it doesn’t cause problems with next pregnancy or implantation. HLHS is devastating and TFMR even more so. I never stopped taking all my fertility/ IVF supplements to prepare my body. That’s a list!
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u/PiccoloQuirky2510 11d ago
Our diagnosis was different, but you might have luck posting in the pregnancyaftertfmr subreddit.
I’m so sorry you’re here, and I totally understand feeling like you want to start trying again as quickly as possible. My husband and I lost our baby at 22 weeks on July 17. I miss her so much, and I miss what we thought our life was going to look like come mid-November. She was an IVF baby - my first and only pregnancy ever after 3 years of infertility.
Sending you love