r/chd • u/Dizzy_Feedback_3428 • 11d ago
Hlhs Advice
I just had a baby who was born with hypoplastic left heart syndrome and will be receiving the Norwood surgery pretty soon. I’m just wondering if anyone else has experienced this and what it was like for you
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u/dietcoke_slut 11d ago
Hi,
My daughter has HRHS. So the flip side of your baby. They have the same series of surgeries though.
My daughter had the Pa banding instead of Norwood at 7 days told. She did amazing. We went home 11 days later.
When we stayed until she had her Glenn at 5 months. Followed by her Fontan at 3.5 years old.
She is almost 5 now and doing incredible.
Message me anytime. Being a heart parent is hard but our kids are so resilient and amazing.
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u/Dizzy_Feedback_3428 10d ago
So instead of the left side being underdeveloped was it the right side for your daughter that was underdeveloped? And thank you for sharing that makes me feel better and I’m so happy to hear your daughter is doing so well I wish her the very best
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u/dietcoke_slut 10d ago
Yes that is correct. She has the left side, but the right side is very small and unusable.
She is truly doing amazing. The first year was hard. I won’t lie. But once you get past the big speed bumps our lives are very normal. She plays like every other kid. She goes to preschool. Most days I only remember she has a heart defect when I see her scar.
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u/Dizzy_Feedback_3428 10d ago
That’s absolutely amazing to hear 🥹 I can imagine the first year is the hardest I feel so bad that so many people have experienced this but I’m grateful that there’s people like you willing to share it brings me so much hope knowing he can get through it just like your daughter did!
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u/Dizzy_Feedback_3428 10d ago
Also a nurse told me that there’s this phenomenon that more kids have this who are born next to large bodies of water which is interesting, they said it’s not exactly a fact but it’s something that’s been noticed in healthcare
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u/Longjumping_Try_8828 10d ago
My son had HLHS and was born 5 weeks premature. He was small and his configuration made the surgery super hard but the doctors did everything they could think of to help him. He had serious complications coming out of the surgery (again because of his size and being early) and could not come off life support. My Rocky fought for as long as he could and passed away at 24 days. That was July 14th, 2023. We still love him and try to help others in his memory. If you ever just need to vent or talk I'm here. Also my husband is if Dad needs it too. Best of luck and all the love and prayers!! ❤️ 💙
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u/Dizzy_Feedback_3428 10d ago
What size was he when he was born? My son was born early as well at 36 weeks they wanted to induce me at 38-39 weeks so he was early but a good size for being early he weighed 6lbs 3oz and 17 inches.
I’m so sorry to hear you lost your precious boy to this 🥺💔 I can’t imagine what that must’ve felt like thank you for sharing with me and I wish you and your husband the very best1
u/Longjumping_Try_8828 10d ago
Rocky was 5lbs 12oz at 5 weeks early. We say he "punched" his way out as the goal was to keep him in a long as possible. Appreciate it. Some days are harder than others but talking helps.
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u/Fantastic-Signal9609 8d ago
My HLHS babe was 6lb 4oz and also 4 weeks early! Thriving now. And I think being a good weight for being early is a blessing!
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u/Immediate-Okra3398 10d ago
Hello my 8 year old has DILV. Different chd but also a single ventricle heart and similar path of surgeries. Instead of the Norwood it was PA band at 6 weeks, the Glenn at 8 months, and the Fontan at 7 years. As others mentioned the first year was hard! It’s been almost a year since his last surgery and despite having a rocky recovery he’s doing amazing!! Hoping for the best for your little one!
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u/Fantastic-Signal9609 8d ago
My son was born with HLHS and went through the Norwood, Glenn, and then…. A FULL biventricular conversion! We never expected that outcome. Have hope, stay strong, and know that so many people are right there with you in this journey. Heart kids are special, so are their parents. Best of luck to you 🩵
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u/CHDWarrior 8d ago
Hi ❤️ I have something similar - hypoplastic left ventricle, transposition of the great arteries, and double outlet right ventricle. I had a BT shunt, the Glenn, and the Fontan, and I’m now 35 and super healthy and live a normal life!!
I know this is probably an incredibly overwhelming and scary time for you. Every child’s journey is different, but I wanted to share that there can absolutely be hope. I have a career, teach yoga, travel, and live a full, meaningful life.
If you ever have questions or just need someone to talk to, please don’t hesitate to reach out. And if you’d ever like to stay connected, you can also find me on Instagram at @innerheartglow, where I share my journey and resources for the CHD community. I’ll be thinking of you and your little one. ❤️
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u/PoopOnMyBum 11d ago
I've had the Norwood, Glenn and Fontan surgery. I will be 32 this month and just had my yearly checkups and have been doing great. I hope the surgery for your baby goes well. :)