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. 💙
Deep Inside Central District's Inclusion Zone.[A part of NC+]
J i h z z y enjoys the view of a reclaimed wasteland while Mara enjoys a view of her own.
I'll do my best to put up some more content regularly; however, I wanted to post this as a bit of an "excuse my likely absence" but for the near future.
My late Son's memorial is coming up this November 21st. It'll be the first one we experience, my wife and I.
Our son, who's middle name is Atlas, (Keeping the full name private for obvious reason) , was a warrior of CHD. A grueling battle that takes a toll on everyone involved.
I ask that you please excuse any lack of interaction that may occur as we're not really sure how we're going to handle this. We check our Tumblrs every day throughout the day and we love everything we see. (I'm way worse about not 'liking' things I should)
Just know that all of your content is appreciated and not to take our lack of interaction as a sign of anything otherwise.
As a way for me, personally, to memorialize him, I use the "#Atlas Forever" tag. Something to keep an eye out for in my future work, as he has been an inspiration to so much for me. I remember him where I can. Feel free to use it whenever you feel loved, as anytime I feel loved, I think of him to share the moment. I hope it can become something of a happy trend for some people. I think that would be nice.
When Fin was born, we had no clue about his health. As far as we were aware, he was a healthy typical baby.
Very shortly after birth, Fin was rushed to a local children’s hospital due to a suspicion of Down Syndrome. That itself wasn’t alarming, what was worrisome was that there are many very serious health conditions that are common in individuals with DS, and we har zero idea of his health status.
After a few days in the nicu, he was confirmed to have a medium large VSD (Ventricular Septal Defect) which is a hole in the lower area of his heart. This is a type of CHD, or Congenital Heart Defect. With its size, it would not be able to repair itself without surgery. We left with lots of information, many appointments with specialists, and the general knowledge that he would need open heart surgery around 6-9 months of age. I also had a list of heart failure signs that I had to carefully watch for.
Almost right away we all noticed he wasn’t gaining weight properly. He was extremely sleepy (a CHD sign), had a poor latch (due to DS), and his heart was just working so hard that he was burning more calories than he could take in. We tried so many things but not much truly helped. At one point, he even aspirated during a bottle feed and ended up with pneumonia, resulting in a scary week long Hospital stay.
By the time he was a month old, it was clear that surgery couldn’t wait. His body was working way too hard. So we had the goal to get him to 10lbs, then he’d undergo his repair.
By two months old, things were getting worse. He was struggling to gain weight still, and he was beginning to show signs of early stage heart failure. We knew he wouldn’t be able to reach his goal weight and that we’d have to go ahead with his surgery.
He had his surgery at three months old. It lasted around 9 hours in total. It was absolutely terrifying. Thankfully, his repair was a success and there weren’t any complications! Woo!! That first photo is when I was finally allowed to see him. I can’t even begin to count the amount of tubes and wires- it was daunting.
For reference, Fin was 7.11lbs at birth. On the day of surgery at 3 months, he was 8.6lbs. He was categorized as ‘severe failure to thrive’.
Recovery went fairly smoothly. I stayed with him all of the 12 days, and I honestly struggled to leave his side. I still struggle with it anytime he’s admitted. He won the hearts of the entire peds cardio floor (not shocking) and he slowly began to gain weight. He had follow up appointments with cardio extremely often for a few months, then just monthly, every 3 months, etc. He’s currently on just once a year!
His VSD repair and his heart have thankfully worked perfectly ever since. CHD isn’t something that can be cured, however. Anytime he’s sick, his heart will get checked. Any illness can cause issues with a person living with CHD. He’s had several hospital stays, minor surgeries and illnesses ever since but his heart has continued to hold strong.
That brings us to today! He’s a rambunctious 4yo who adores his brother, screams a lot, loves foxes and dinosaurs, and aims to destroy literally anything he possibly can. He is a charmer by nature and wins over the hearts of everyone he meets- even though he uses it as a trick a lot of the time, to get what he wants. He’s cute, he knows it, and he knows how to use it.
We had no idea that my son had a heart problem until he was 4 months old and his pediatrician heard the murmur. Went to the specialty clinic and got some heartbreaking news: our son would eventually die without surgical intervention. My son’s surgeon has literally held my son’s heart in his hands four times. Four open heart surgeries in three years.
My son is doing very well right now. He is now 5 years old. He loves building intricate things with Legos, being a big brother, and wants to have his own YouTube channel one day. Bc of research, my son is alive. Eventually, he will most likely have artificial valves put in, which would limit him in activities. For now though, he’s looking forward to t-ball, swimming, and basketball.
1/100 kids is born with a CHD but CHD research gets 5 times less funding than pediatric cancer. Don’t get me wrong, cancer is awful and needs that funding as well.... but our little heart heroes could benefit from more awareness and research!
DECALS FOR SALE!!!!!! These are permanent decals perfect for vehicals, laptops, fridges, journals and anything else you want to permanently affix it to. They are $5 with free US shipping. I can make other decals upon request such as sigils. Payment is through PayPal. Message me for more details.
A symbolic “Sister of a Heart Warrior” design created to represent strength, love, and support for families living with heart conditions. The heartbeat ECG line forming a heart symbolizes resilience and the powerful bond between siblings standing together through the heart warrior journey.
Made a sticker idea out of a joke I made to cope with disabled guilt, since half of my heart is swollen with excess blood backwashing into it due to my artificial valve leaking. I tried to include the sealed hole in my heart and the artificial [darker] valve too. Unsure if I'd ever put this up anywhere but was fun to make into a sticker idea.
