Dec 3, 2025
Shout out to folks with Hypoplastic Left Heart Syndrome!
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Shout out to folks with Hypoplastic Left Heart Syndrome!
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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.
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.
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.'
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
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
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.
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.
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.