Going about daily life is hard enough without medical problems slowing you down. It becomes even harder when you have to deal with a condition that affects almost every aspect of your daily life. HLHS (Hypo-Plastic Left Heart Syndrome) is a condition that affects myself and hundreds of other children and adults like myself. It is stated by The CDC that one in every 4,344 babies are born with HLHS. That's just under 1,000 children every year. Survivors of this condition will commonly say that they have "half a heart", which is, in fact, true. (Let me state clearly that a "hole in your heart" is NOT the same thing.) The HLHS condition occurs when the left side of the heart does not fully develop, causing only half the heart to function. If not treated immediately, the child will die. At this current time, there is no known cause or cure for this bizarre phenomenon. However, there is hope.
There is a series of open heart surgeries that can save the child's life. Paired with medicine and designated nutrition, life is possible. The three procedures are known as the Norwood, the Glenn, and the Fontan. Now, I won't go into what exactly is done during these procedures, but the short version is a complete redirection of blood flow through the heart, allowing only two chambers instead of four to pump blood through the entire body.
Nobody can ever really tell what's going on inside your body just by looking at you from the outside. So, how are they supposed to know that your heart isn't functioning at 100%? If they're clever, or well educated, they will hopefully see the signs. Most aren't, unfortunately. What are these signs that you should look out for then besides the large scar down the center of their chest?
1: Shortness of Breath/Low Energy
HLHS can drastically lower your energy levels. When your heart cannot work at full capacity, some things must be restricted. So, if you're hanging out with a friend and they tend to get tired easily, or out of breath much faster than you, something might be up. It's not always HLHS, but there's a good chance that it is.
2: Blueness When Exhausted
When your body gets low on oxygen, it is common for your lips, ears, nose, or fingers to turn blue or purple. It takes a lot to get that way, but it does happen. For someone with HLHS, their heart can't pump blood as fast or as productively as others. This causes their blueness when they get tired, or when it's too cold. Don't panic, just have them sit and relax till they look better.
3: Increased Bleeding or Bruising
When the heart can't function fully on it's own because of a condition, blood thinners are commonly taken to ease the work the heart has to do and decrease the chance of a heart attack. Blood thinners can cause that person to bleed much easier and much more when cut, scratched, or stuck. Bruising is also increased since there is easier blood flow to the injured area of the body. Even a small paper cut can bleed as if it was something much worse. It looks scary, but it's not too big a deal.
4: Restricted Diet and Medication Consumption
As stated before, blood thinners are very common in HLHS patients. Most pain relievers (with the exception of a few) contain elements of Aspirin and other blood thinners. It becomes unsafe to take more than what is prescribed by your cardiologists, so HLHS patients might decline certain medications despite being in pain. Certain foods can also react badly with the medications already taken on a daily basis (I personally can't have Grapefruit or Licorice).
There're many other signs that someone might have this condition. Be patient if you know someone with HLHS. It may be hard for you to hang out when they can't always keep up, but trust me, it's just as hard on them. If you see them struggling, be sure to ask if they're okay. They would appreciate the acknowledgment--to a point. It can be very scary knowing that your buddy doesn't have a whole heart, but treating them like a porcelain doll only makes them angry. Inclusion is key. Try to find things that don't require a lot of physical activity or extended time in the sun, as the sun also reacts badly with medications and their body. Yes, they're pasty, but for a reason.
All in all, HLHS can be hard to handle, but I can almost guarantee that the person experiencing the condition doesn't give it a second thought most of the time. It's just part of their life like everything else is.
