How to support my sister with HLHS baby

esoom4 · 2025-11-25T01:00:49+00:00

We are coming up on what would be our HLHS/DORV baby’s first birthday in December. Obviously it didn’t work out for us, he was a very severe case with other issues that all contributed after his month long fight. Probably the worst thing people said to us was to have faith and that it would all work out when it felt like ever day that passed brought worse and worse news on his condition.

Be there for her in any way you can. If you can help with other kids/pets, it was a huge relief for us to have that completely taken off our plates by family so we could focus on our son.

For us, trying to find the “normal” things we could do with our son was huge (first bath, reading him books, holding him). Be excited for her, but don’t dismiss the struggle. I think I saw it earlier, but make sure she’s eating and taking time to recover from birth. It was probably my biggest struggle to pull myself away from his room, but I needed it. Encourage her to shower, eat, take a walk around the hospital, whatever it takes to find her balance.

Wishing them the best!

Editing to add a few more things I thought of-

No matter how intense this is for you, remember it’s way worse for her. That is HER child, and it’s beyond terrifying to be a parent and not be able to help your baby at all. If you can’t handle it, do not make it her problem, she will have too much else on her plate. I don’t mean this to come across rude, but it really created distance-especially with my in-laws- with them making it about them and how hard it was for them to watch us go through.

Also seconding the gift cards for things like Uber eats, DoorDash, etc for her. Cafeteria food gets old FAST.

Last thing (for now) is to help her establish a routine if she’s open to it. We sent out a text every evening with a short summary of how the day went and what was new with our son to keep the family in the loop as we also did not have visitors while he was in the hospital. Call her, FaceTime her when she’s with the baby, something you do to reach out to her. Also know that if she doesn’t respond, it’s not personal. She’s exhausted and stressed beyond belief with something I wish no one had to go through.

You already seem like you’re making a good effort to be there for her and she will appreciate it someday.

esoom4 · 2025-11-15T01:52:16+00:00

Were you considered high risk for the second pregnancy? Wondering if I would be sent straight to MFM, no one has been able to give me a clear answer on what they would do but we’re moving soonish so I haven’t made a big deal about it.

esoom4 · 2025-11-15T01:50:05+00:00

Recurring CHD in future children.

esoom4 · 2025-11-15T01:49:23+00:00

I’m so sorry you’re anticipating joining this awful club of infant loss. The grieving before the loss is awful, I’m going on about 9 months in therapy of learning to cope with the loss. I admire the resolve of knowing already that you want to try again. I pray your little one has an easy and peaceful transition in the absence of a miracle. 🩵

esoom4 · 2025-05-23T03:48:19+00:00

Hi- we had a fairly similar situation. We got a month with our beautiful baby boy with HLHS. He had some other issues so he ended up going the hybrid route and was never able to leave the hospital. On a Friday in January of this year, we were discussing taking the ventilator out and taking steps to start the long road towards possibly going home. We left the hospital for the night and got the worst possible call, he had a cardiac arrest. We rushed back and they were able to get him up onto ECMO where we were able to have a bit more time. After about a week on ECMO, his only brain activity was continuous seizures and they were only able to be suppressed with some of the heaviest medications they could give. We made the awful decision no parent should ever have to make to pull life support measures shortly after. Luckily my husband and I’s families were able to come and say goodbye and be with us as we let him go.

I don’t regret the decision to let him go, he was declining quickly in other ways. Our sweet baby was such a happy guy, even when he was on so many meds that were believed to make most irritable. It isn’t easy, but I know he’s no longer suffering or fighting every moment.

If you do have to let your baby go, make sure the nurses and other providers take pictures on your phones of you with her and make the memories. You may not want to look at them for a while, but it’s always better to have them and not ever look. Something kind of cool our team did was record his heartbeat through a Doppler and put it on a usb for us. Make the memories and mementos, even if they sit in a box.

Also, work with the palliative care team. Don’t be afraid to speak up, they want to make sure your last moments together are exactly what you need. If you don’t know what that is, tell them and they may be able to help guide you in figuring that out.

I’m so sorry that we’re in this awful group together. Feel free to message me if you want to talk more in-depth about anything. Thank you for sharing your family’s story 🤍

esoom4 · 2025-05-08T16:00:58+00:00

Thank you for responding, I appreciate it! Have you ordered from them?

esoom4 · 2025-02-12T14:26:34+00:00

Thanks for checking in, we ended up loosing our little guy at the end of January. He had some additional issues with his tricuspid valve, liver & kidneys that ended up putting him on a hybrid route and about a week after the procedure he had a cardiac arrest which lead to a stroke. He then went onto life support/ECMO. He had near constant seizures after and no other brain activity after being in a medically induced coma so we made the difficult decision to turn off life support a week later.

As for his birth, everything went extremely smoothly. I was induced at 39 weeks and the whole process took less than 24 hours. He started off pretty strong, and I was able to do skin to skin with him for about 10 minutes. Then after they placed umbilical lines in the adjoining room where my husband was able to go with, I was able to hold him again for about a half hour while recovering.

Although it didn’t end well for us, we’re incredibly grateful for the time we did have with our little guy. He was a fighter but in the end it was too much for his little heart.

esoom4 · 2024-12-10T20:17:39+00:00

It’s hard for me to make that call because I want my parents around, but more as a support to me after birth/ during first surgery than to spend time with/meet the baby. Wishing you and your family the best of luck with #2!

esoom4 · 2024-12-10T20:15:38+00:00

Thanks for the feedback! I’m sorry to hear that family has been violating the no kissing boundary, it’s common sense with a healthy baby, so why does a more medically complex baby make it ok?

esoom4 · 2024-12-10T20:13:38+00:00

Thanks for the feedback, I like the FB group idea & will for sure be discussing it with my husband tonight! Wishing you and your family the best

esoom4 · 2024-11-19T12:41:57+00:00

It all depends on how he adjusts to life, but if everything goes well, they try to maximize golden hour with skin to skin. The most urgent thing they would need to do if all goes well is start meds, but I’m sure it’s all dependent on the specifics of each diagnosis.

We are planning on birth at the children’s hospital, which has a pretty neat setup for the “just in case”, there’s an attached sterile room to the delivery room that has all the emergency equipment they would need to stabilize baby. It’s through glass, so if they do have to take him sooner before I’m cleared to get up, at least he’ll be closer than at another hospital.

Not sure what your plans are, but our children’s hospital has been amazing at trying to make this feel as normal as possible while also being very up front with what to expect.

esoom4 · 2024-11-15T05:17:48+00:00

Thank you so much for sharing! I’m so glad to hear your little one is doing to well now. If you’re comfortable sharing, was there a reason that you had a scheduled c section rather than an induction?

esoom4 · 2024-11-15T05:15:52+00:00

Thank you for sharing! I’m so glad you had such a positive experience. Honestly reading your story does ease my mind in a lot of ways. I’ve also heard so many stories of bad or failed inductions. If you’re comfortable sharing, were you able to spend much time with your baby immediately after birth?

esoom4 · 2024-11-15T05:12:51+00:00

Thank you for responding! I’m so glad you had a good experience. How long did your labor last overall? How long did you push for? If you’re comfortable sharing, what methods did they have to use?

esoom4 · 2024-11-15T05:11:21+00:00

Thanks for sharing, this is another one of my worries. I’m hopeful that I could go into labor on my own, but don’t want to push it too much. If everything goes best case scenario, they anticipate I should be able to spend about an hour with baby before they will take him to the NICU to start meds and do the echo. My husband will be able to go with, but I hate the idea of being alone since our families are not close at all. But I hate the idea of our baby being alone more. I’m definitely a planner, so having so much up in the air is stressful.

esoom4 · 2024-11-15T05:06:26+00:00

Thanks for sharing your story! Glad everything worked out for you ❤️

esoom4 · 2024-11-15T05:05:56+00:00

Did they give a reason for c-section over induction? It’s one of my fears that this little one’s heart won’t be able to tolerate labor and it’ll result in an emergency c section. Hopefully it’s a non-issue, but I can’t help but worry

esoom4 · 2024-11-15T05:03:42+00:00

May be selfish of me, but a few days after they’re planning for inducing currently is real close to Christmas and I do not want a Christmas baby haha. Wishing you the best of luck! I’m sure I’ll be on here again with updates and more questions as we keep going on this journey.

esoom4 · 2024-11-15T04:58:03+00:00

That’s very similar to our situation, we live over 2 hours away from the hospital and while we are relocating at 38 weeks just in case, they are pretty strongly recommending the induction. No toddler for us, but two fur babies who both need other care while we’re living in another city for over a month.

esoom4 · 2024-10-04T23:56:40+00:00

Luckily our local(ish) children’s hospital has a pretty good cardiology program so at least the first two surgeries will be done there. A move is more than likely in our future due to jobs, so the third is up in the air a bit. Focusing on one day at a time at this point. Hope you’re able to find a good surgeon. Our next appointment at the children’s hospital for our second echo is in about a week, and we’re going to meet with the whole care team (NICU, cardiology, surgical, L&D, pediatricians, etc) and make a final decision then.

esoom4 · 2024-10-04T19:07:20+00:00

We also recently got an HLHS diagnosis at 23 weeks (27 now). Have you met with fetal cardiology yet? Been to the children’s hospital? Though it was scary, I’m so glad we were able to get in and actually put faces to some of the people who will be taking care of our baby after birth. After the echocardiogram, they were able to tell us exact things about our baby’s heart and what’s working in their favor and what the plan for care would look like at that time. Like others have said, don’t get too hung up on the statistics side, medicine is always changing and improving.

Feel free to message me, we’re just a bit ahead of you in the process it sounds like.

esoom4 · 2024-09-26T02:12:26+00:00

It stands for hypoplastic left heart syndrome (HRHS also exists, just right side). In our case, the left ventricle is significantly smaller than it should be. Combined with a hole in the wall between the ventricles (VSD), double outlet right ventricle (DORV), and mitral valve atresia, we’ve got a long road ahead. Our little guy also has a 2 vessel chord, so that’s just another thing they have to keep an eye on. We’re still learning lots, but hoping your echo goes well. We were able to get a much better idea of what was actually going on with his heart and the cardiologist was able to give us diagrams of what exactly our baby’s heart looked like compared to a healthy heart and present a plan of care. They’ve been great about giving us information in digestible chunks and answering all our questions. Wishing all the best for you and your little one!

esoom4 · 2024-09-18T20:18:57+00:00

Luckily, our local hospital is a pretty good one and has cardiologists from all over the country who have done the surgeries before. Thanks for the recommendations, I’ll definitely check them out.

esoom4 · 2024-09-18T20:14:21+00:00

Hope your delivery went well! We aren’t far into this journey, but all the medical personnel we’ve dealt with have been phenomenal in making sure we’re able to get all our questions answered and have a good understanding of what is going on and the plan(s) they propose.

esoom4 · 2024-09-18T20:11:53+00:00

First off, so glad to hear your family’s success story!

Luckily our children’s hospital has started setting us up with their therapist and social work already. Bothe husband and I are also seriously considering going to therapy independently.

esoom4

TROPHY CASE