#hlhs

[disability-shout-outs]

Shout out to folks with Hypoplastic Left Heart Syndrome!

[schattenglanzpoesie]

Es ist wieder Weihnachten. Die Lichter hängen, aber sie wärmen nicht richtig. Alles glitzert, nur du fehlst.

Ich frage mich, ob du weißt, wie sehr dieser Dezember nach dir riecht. Nach Hoffnung, die geblieben ist, obwohl du gegangen bist.

Manchmal stelle ich mir vor, du sitzt irgendwo ganz oben, mit einem Herzen, das jetzt stark schlägt, ohne Kabel, ohne Alarme, einfach frei. So, wie es hier nie durfte.

Du hast kein Weihnachten zu Hause erlebt. Keinen Baum, keine leise Abende auf dem Sofa. Und trotzdem bist du jedes Jahr da, zwischen den Kerzen, zwischen meinem Atem, zwischen dem, was fehlt.

Vier Weihnachten ohne dich. Und doch mit dir. Weil liebe nicht stirbt. Sie tut nur weh.

Wenn es schneit, dann hoffe ich, du lachst. Und wenn irgendwo ein Stern flackert, tu ich so, als wärst du das.

[bardic-tales]

Hypoplastic Left Heart Syndrome (HLHS)

I have been working on this post since Jan, gathering info since this heart defect hits close to home for my family, and because I always been the go-to researcher for my family. It's what I do well.

Hypoplastic Left Heart Syndrome (HLHS) is a rare and serious congenital heart defect that affects about 1 in every 4,000 newborns. It develops before birth, during the early stages of fetal growth, and is usually diagnosed shortly after delivery or sometimes even during pregnancy through advanced prenatal screening.

In HLHS, the left side of the heart is critically underdeveloped. This includes the left ventricle, mitral valve, aortic valve, and ascending aorta. All vital components responsible for pumping oxygen-rich blood to the body. Because of this underdevelopment, the heart can't function properly on its own.

How Serious Is It?

Without treatment, HLHS is fatal, often within the first few days or weeks of life. But over the past few decades, surgical advancements have turned what was once a uniformly deadly diagnosis into a condition that, while still life-threatening, is treatable and survivable.

The Treatment Path: A Long Road

Babies born with HLHS typically undergo a series of three major open-heart surgeries within the first few years of life:

Norwood Procedure – Within the first week or two after birth

Glenn Procedure – Around 4 to 6 months old

Fontan Procedure – Usually between 2 and 4 years old

These surgeries work together to reroute blood flow, allowing the right side of the heart to take over for the missing left side. After the Fontan, the blood from the body flows directly to the lungs without passing through a ventricle first, relieving strain on the heart.

But even after this third surgery, HLHS is not “cured.” Most children live with a single-ventricle physiology, and over time, the heart may begin to wear down. Many children eventually need a heart transplant later in life.

The Human Side of HLHS

Behind every diagnosis is a child fighting to grow, laugh, and live. There is a family holding their breath through every scan, surgery, and setback.

Tomorrow morning, my 4-year-old cousin will undergo his third open-heart surgery: the Fontan Procedure. This is the final planned surgery in the HLHS surgical journey, and it’s a major turning point. He’s already made it through the Norwood and the Glenn. That alone makes him a warrior. But tomorrow is another battle. And after that? He will likely need a heart transplant in the near future.

He’s an incredibly brave 4-year-old, and so are his parents. HLHS isn’t just a medical condition. It’s a daily fight for strength, stability, and hope. Watching a child go through this changes you.

Why Awareness Matters

Because HLHS is rare, many people, including expectant parents and even some medical professionals, aren’t aware of it until they’re living it. I never heard of it until 4 years ago.

Early diagnosis, proper care, and continued research can make all the difference. HLHS kids are warriors. Their hearts may be half the size, but their strength is twice as powerful. 💙

[just-two-blokes]

Someone: 'You're very special.'

Me: 'I know, the chances of being born with my heart disease are 0,16% from 1'000 childbirths. The chances of getting older than ten years old are about 50%-70%.

So yes, I'd say I'm special'

Them: 'You can't take a compliment.'

[copperphillips]

Hi my name is Copper Phillips and I was born with a congenital heart defect called Hypo plastic left heart syndrome I have just recently been wanting to learn more about it and the ways it effects me personally. I live a pretty normal life I have an amazing boyfriend and amazing friends and I am pretty lazy but that’s not because of the Hlhs that’s just me being a teenager, I just got a job and I would say I’m doing pretty well and I am so blessed and grateful to be doing so well. I have been getting pains recently, when I say recently I mean in the last month or two that I was to scared to tell my mom, I felt like I couldn’t tell her because it would make it real and I didn’t want that trama and horrible memories to come back but I have a best friend who I am so grateful for to give me that little bit of tough love and he definitely helped me tell my mom she reacted exactly how I imagined and my step dad kinda took over the convo but I still haven’t told my dad as In bio dad and I’m definitely not ready to tell him I don’t really know how to respond to him when he’s emotional but I will try to keep updating.

If you have any questions or things to tell me I would love to listen and answer

[aspiring-writer-hidden-voice]

Hello, loves! Let’s start off with a positive note:

WE ARE ALIVE!

Now that’s out of the way, a lot of things have been going on. Induction did not go as planned and an Emergency C-Section had to be performed. I didn’t have the opportunity to hold my baby girl before she was swept off to the nearby children’s hospital. I was unable to join her and my husband for three days while she was in the NICU but I was discharged swiftly thanks to the motivation of seeing them.

Baby girl (Sakura) has what is known as Hypoplastic Left Heart Syndrome, meaning that she will need three surgeries for her single ventricle heart to function as it needs to. The road for us is going to be long and bumpy but we are as prepared as we possibly can. Patience is the key in this marathon we have embarked upon.

[helleboresblog]

1. #HeartHero trends on Twitter.

2. I go to look because it usually has to do with HLHS.

3. It's some kid asking Marvel actors that contribute to greenhouse gasses and crypto to notice him. None of them start fundraising or awareness for this rare birth defect, colonialism continues to kill to people like him and I.

[mamas-still-doing-it-all]

I just keep going. No matter what… even when I don’t know how I do it. I take this pain everywhere I go, all the way up with me and all of my successes.