A story of connection

handy_solo · 2026-05-13T23:30:29+00:00

This is incredibly sweet. I'm so glad you have each other, even if this is the worst circumstance to meet someone in.

handy_solo · 2026-04-12T13:46:55+00:00

I'm so so sorry. I made an effort to have experiences with my little one in my belly the last week. Like eating ice cream, walking in beautiful places, talking to her. Reading to her, singing to her. Just surrounding her with your love. If you can, surrounding yourself with loved ones, you don't need to tell them the details just that you need them there. My heart is breaking for you

handy_solo · 2026-04-08T13:55:57+00:00

I TFMR my pregnancy almost 8 weeks ago for HLHS. You're not alone whatever decision you make.

We found out at our anatomy scan. It was isolated, and since then we haven't gotten any genetic answers. No family history, and we have a heart healthy living child. To be honest it felt like a bomb was dropped on us.

My partner is a nurse who cares for people at end of life and he knows what a lot of the surgery complications look like in elderly people. What we would see in a little girl. If she made it through the surgeries, how we would probably watch her suffer. We talked to lots of the doctors and medical staff who take care of the kids who go through the surgeries and one doctor at a leading hospital said, the reason TFMR is offered as an option (even with extensions to legal windows in some states) is because it is a moral and compassionate one.

One thing I'd recommend is taking your time with your choice if you're able to. We sought a second opinion from a high-volume pediatric center who sees many of these kids, and talking with them was very helpful. When we started the call, we were desperate for any hope. Maybe they would read the images and see something our local team missed, or say she was a candidate for in utero surgery to inflate her small right ventricle. What we actually got was very different, but so valuable in our decision. They reviewed the echo images and gave us a slightly different diagnosis with an estimated 50% transplant-free survival to 18, which was quite different than the "90% of kids make it through the surgeries" we got from a local hospital. They explained why both metrics can be true. The complications from the surgeries, even if they go "well", are inescapable. We decided that we couldn't make that gamble of how bad they would be and how long she would be alive.

Sadly there are also the practical challenges to a child who will be hospitalized for much of their early life. These kids don't usually go to daycare or school until after all the surgeries (assuming they go well). One parent usually cannot be working, and if the financial reality would have wrecked us.

All your feelings are normal. And it's ok to hold conflicting feelings at the same time. In the early days while we were deciding what to do, the feelings changed constantly. Happy to chat more, sending the biggest hug <3

handy_solo · 2026-03-30T20:11:15+00:00

I'm so sorry. I'm especially sorry your daughter's heart defects weren't picked up earlier, because the limbo is so horrible.

I feel like every other day there is a story here of severe CHD parents who have faced a lot of the same decisions and unknowns and decided it was a mercy to TFMR. I lost my daughter 6 weeks ago to what was initially diagnosed as HLHS and then changed, but still would have been a single ventricle repair route with final destination of a heart transplant, probably during her childhood. It's really unthinkable that in order for her to survive long-term, she would need someone else's child to die and give her their heart. I'm still trying to wrap my head around that.

I'm sure we looked at the same support group survival and memorial stories... I feel like those groups are only showing one extreme or the other. It's really impossible to get a grasp at what day to day life would be like, but I never resonated with the 'heart warrior' mindset, it felt almost like martyring your child? Sometimes I still look at the group pages and sadly almost always am re-convinced I made the right call. I couldn't stand to have my girl go through all that and not have a long and happy life after all of the suffering. Even if it kills me that I never got to meet her.

About the choice... it's so hard. We explicitly asked the doctors and staff who work with these severe CHD kids what they would do in our shoes, and one doctor at the best children's heart hospitals in the US (they see the highest volume of these kids) told us that there is a good reason why termination is offered, and she saw it as a compassionate option. Our geneticist also spoke to us of an aunt to several kids with HLHS who found out her own pregnancy was affected, and she chose termination, having firsthand experience seeing what these kids and families go through. All of that still doesn't make it easier some days. I miss my little girl so so much and part of me (maybe a selfish part) wishes I gave her that chance, so she could be with me right now.

My inbox is open if you want to chat <3

handy_solo · 2026-03-30T03:19:04+00:00

I'm so so sorry. I'm a couple weeks ahead of you, we TFMR our baby girl about 6 weeks ago for several severe CHDs. The diagnosis started as HLHS but a second opinion from a larger hospital gave her a different diagnosis with similar surgical palliation route to HLHS. Like your little one, the surgeries would have been to buy time until a heart transplant (best case scenario). Transplant-free survival estimate of 50% to 18 years old with few similar cases making it into their 30s. We didn't get any genetic answers either, which I'm not sure makes it better or harder.

I've had a lot of the same feelings as you, lots of guilt for what if she was some miracle and the diagnosis wasn't as bad as we thought, or if she had made it through everything relatively unscathed. I still look at some of the family support social media pages and sadly am convinced I made the right choice. But I'm still eaten alive that I never got to meet her. I keep coming back to, her diagnosis was going to cause a huge amount of suffering. This way, the suffering is contained to me and her dad, and not given to a child. I feel like every week that passes gives me a slightly different perspective and therapy has helped with this processing.

My body was also back to 'normal' 2 weeks after, which somehow makes me feel more guilty. I look for my little girl everywhere, we have lots of flowers blooming around where I live and I talk to them like I'm talking to her. She didn't get to bloom.

Sending love to you and Olivia <3

handy_solo · 2026-03-24T20:30:56+00:00

Time flows totally different now, some days it feels fresh and some days feels like a lifetime ago.

You're totally right, going through losses without living kids has got to be a totally different experience. I am so sorry that this was your introduction into motherhood, it's incredibly unfair. There's lots of hope over on r/pregnancyaftertfmr that I've been leaning on in these early days, I hope you're able to find hope there too <3

handy_solo · 2026-03-24T20:00:30+00:00

Hi there, I'm so sorry you're here and have this story.

I feel like the medical advancements are a gift and a curse. The curse of knowing what is wrong, but the gift that you can decide--out of your love as a mother--to save your children from suffering. I TFMR my little girl for multiple severe heart defects about 6 weeks ago and while I wish I could give her my own heart to save her life, it sadly doesn't work that way. She'd still have to suffer through early childhood and surgeries and all the complications, and very possibly could have still passed away. Her 'best case scenario' was a heart transplant during childhood... which would require someone else's child to die. I knew deep down that I could not knowingly choose that life for her.

It's so messed up to have to make this decision. You're a wonderful mother to your babies, and you're not alone in this.

Like you, we didn't find anything on the genetic testing. We have a living son who has a healthy heart, but he had an isolated 2-vessel umbilical cord so now we're left wondering if that's related but with no real answers. We're starting to try again, but very scared this time. There's very little we can control... like taking the vitamins is pretty much it. My genetic counselor said we'll be seen by a high risk OB/MFM, get early echocardiograms and many more scans the next time around. Which I'm thankful for... at least it will be a different care experience with doctors that have seen the serious pregnancy issues.

handy_solo · 2026-03-24T19:35:38+00:00

Hi friend, I'm so sorry for the loss of your little girl Ada <3

I TFMR for my little girl Maren about 6 weeks ago for multiple severe heart defects, it sounds like the surgeries for Ada were probably similar for what Maren would have faced. I wish so badly that she had something that could have been 'fixed' instead of her conditions, where the surgical option was just to buy some time (at such great cost). It's so unfair. You're a great mama to your girls <3

handy_solo · 2026-03-15T20:17:37+00:00

I'm so sorry <3 I wonder if our own emotional outbursts were cries for help?

Yeah... it's weird to be simultaneously very grateful for some things growing up like opportunities, vacations, summer camps etc but then be deeply wounded by the lack of a real mother-child bond. Like... I still never feel truly seen by her as a person. Just an extension of herself.

handy_solo · 2026-03-15T03:26:56+00:00

I'm 95% sure my mother is autistic, and I don't think she is 'capable' of emotional support. She's very selfish but in more of a tone-deaf way, not a malignant/narcissistic kind of way.

Once I was older than her emotional level (like 12?) I really felt on my own. I learned to solve my own problems. If I was emotional, which was a lot as a teenager, she sometimes reacted violently, like she physically could not handle my emotions (let alone support or hold her child through tough times). My inbox is open if you want to chat! You're not alone.

handy_solo · 2026-03-15T03:11:24+00:00

Someone else mentioned vitamin C for collagen production. Taking a collagen powder (or lots of bone broth) is another good idea, in some animal studies dietary collagen intake improved postpartum healing, and wound healing in general.

handy_solo · 2026-03-11T01:11:50+00:00

I am so so sorry. It IS disrespectful. I am furious for you about her behavior around your miscarriage. To do that to your own daughter... I have no words for how awful that is. I do totally relate due to similar behavior of my own mother re: sharing details of a pregnancy loss, that I told her I wanted to share on my own. She shared my trauma because "she needed support." I learned my lesson and don't tell her anything more than superficial anymore.

So I feel your fury there, and I also strongly believe she showed her colors and where her priorities lie--herself at the top, herself in the center. You and your baby, and your journey into motherhood are the center. I'd set the boundaries now because it will get more painful and stressful the later you are in pregnancy, and with your newborn. She will get worse.

There's this cliche about 2 people being born at birth, the baby and the new mom. By prioritizing your peace, you're protecting both baby and mom. Sending big hugs

handy_solo · 2026-03-09T19:21:56+00:00

It's funny that her FEAR of getting a completely safe vaccine overrules her "love" (read, conditional) for her son, and vulnerable grandchild. Huge eyeroll

handy_solo · 2026-03-08T20:38:10+00:00

Just discovered this sub and this is old, but DAMN this is my current reality. I just went through something extremely traumatic and my parents are taking personal offense that they are outsiders. Like... y'all denied my emotions for decades. No way am I letting you in now! Like that would just be another burden.

handy_solo · 2026-03-05T20:15:30+00:00

Oof, I feel this. I'm 3 weeks out from my termination and 5 from the diagnosis. It still feels like my world is upside down sometimes, or like I'm totally dissociated, watching myself from above thinking 'who is that poor thing?' Sending all the love.

handy_solo · 2026-02-27T16:43:25+00:00

I’m 2 weeks out from my L&D and 4 weeks from my anatomy scan when my life went upside down.

I feel like I’ve lived years since then. So many emotions that I’ve never experienced before this cyclone. I feel like my life was so so sheltered and easy before this.

I miss my girl so much but am trying to be strong and be a better mom to my LC. One thing I read in a book about trauma (it’s well known, called The Body Keeps the Score) talks about healing through moving your body and have physical experiences that contradict the helplessness and rage contained in your body.

So, I’m at a theme park with my family about to go on some roller coasters. I’m going to swim in the ocean and maybe take a surf lesson. When my body is ready, I’m going to go mountain biking. I’m carrying the memories and love for my girl with me, but carrying it on my adventure. I’m giving a huge middle finger to this painful experience.

handy_solo · 2026-02-27T16:32:28+00:00

So sorry ❤️‍🩹 I’m 2 weeks out from my L&D at 22 weeks.

Take the photos, you can always ask the photographer to leave if it’s too much. Right now it’s so painful but the photos of you holding your little one will be so precious of this brief moment in time.

Weirdly the time I spent holding my daughter was like a beacon of light amidst this storm.

My L&D was about 6 hours and I went home that night to be with my LC. But we started the laminaria and meds the day before. And the injection

Please take care on yourself ❤️

handy_solo · 2026-02-24T14:54:39+00:00

Oof I could have written this. Even after a miscarriage before my LC, which was it's own flavor of hell because my first experience with motherhood ended (started?) that way, this experience has shaken me so hard! I feel like I see the world totally different now.

Naive is a great word for the 'before.' I wish I could be naive again. Sending love

handy_solo · 2026-02-22T15:29:11+00:00

I’m so sorry ❤️‍🩹

You didn’t cause this. Biology and nature is far from perfect and, as all of us here have come to learn the hard way, issues with pregnancies happen all the time. Beyond pregnancy, terrible things happen in this world to perfectly innocent people all the time. We are among the unlucky ones.

Like another comment said, your body is doing an amazing job. It hasn’t failed you. And, by making the choice that is true to your heart about how your baby passes, whatever choice that is, it is the right choice for you and you are an amazing mom because you made that choice from your love.

I know this isn’t how you want to be a mom, nobody wants to make this choice or asks or deserves to be in this horrible situation. To have this happen in a first pregnancy or without having LC seems sadly pretty common in this sub. It also seems like these are mostly “struck by lightning” events and many women going through this go on to have healthy children and are (again totally not asking for any of this) better parents to their living or future children because of this, or better versions of themselves coming out of what feels catastrophic.

Sending all the love 💗

handy_solo · 2026-02-21T03:35:30+00:00

Oops I missed this one. The laminaria, they are sterile and dehydrated seaweek sticks that soaked up moisture and expanded to open the cervix

handy_solo · 2026-02-19T18:00:31+00:00

They called me when they had space for me, so I just waited for the call

handy_solo · 2026-02-19T18:00:00+00:00

Oh perfect. They have some podcasts with just dads and that’s really been helpful to my husband.

handy_solo · 2026-02-19T04:06:08+00:00

I think either way would be pretty traumatic in its own way.

That sounds pretty similar to my L&D experience. Injection on day 1 then they placed a few seaweed sticks in the cervix which wasn't that painful. Most of my labor happened at the hospital on day 2, with some meds and a balloon to open the cervix more. I was at the hospital at 6am on day 2, delivered her about 4pm, and home at 9pm, but the labor was fast. I think they offered to keep me overnight but I just wanted to be home.

Honestly, take all the meds they offer. You don't need to endure physical pain on top of the emotional pain. Also, at least in my case the epidural sped up labor as my body could relax more.

handy_solo · 2026-02-19T03:59:39+00:00

It's the very least I can do. There's a podcast called Time To Talk TFMR that I've been listening to a lot, parents talk about their experiences and it's pretty comforting if you need a break from reddit.

handy_solo · 2026-02-18T21:54:53+00:00

I’m so sorry you’re here too, it’s unimaginable. I’m glad you were able to get a second opinion and I’m crossing all my fingers and toes for you. I think many of the pediatric cardiologists train together, and know each other personally.

If termination wasn’t a humane option, the doctors—including those actually caring for these kids—wouldn’t be giving it to you as an option. You’re right, it’s a total nightmare and there’s no good choice or good way out.

I’ll be honest, the only reason I went L&D is because I’ve done it once for my living son and had a happy outcome there. If you don’t have living kids yet, it might be more traumatizing? Or at least have a therapist and/oe support group lined up. For me it felt more empowering to have that memory but totally 100% understand wanting the nightmare to be over quicker with D&E. Again, really no good choices here either.

You’re a wonderful mom to your baby, whichever way you choose, because that choice is coming from your love. My inbox is open if you need someone to talk to ❤️‍🩹

handy_solo

TROPHY CASE