The Doctor said, “Your child has HLHS.”
What came to our mind when we first heard about it? To be honest, nothing. A total blank. We didn’t even know what it is. We didn’t even know that such thing existed until our child got it.
What is really HLHS – Hypoplastic Left Heart Syndrome?
The acronym stands for, Hypoplastic Left Heart Syndrome. Let’s not get to technical about what it means. We are not really professionals to explain scientifically and precisely what it means. For layman’s explanation, it means that left side of the heart did not develop during pregnancy. So basically half of the heart was only developed and the other part couldn’t function completely. It was scary and shocking to be honest for the first time you hear such thing. The first thing you could think is will my child going to live? Can this be fixed? If yes, what’s the life expectancy of my child? So many questions and explanations that we needed to ask and hear. But the only concrete thing that we know is that we feared for our child’s life, will we ever going to bring her home? Will she be able to live a normal life?
As a parent with a child having HLHS, it is everyday full of worries and uncertainties. It is always getting up everyday doing your normal thing but with an extra load. You want to make sure your child’s health and safety is at first. Every small changes on your child you take notes and think, is it something or is it just nothing? As a parent having a kid with medical condition, I tend to educate myself. Trying to know what to do and not to do with her/his condition.
Having HLHS – Hypoplastic Left Heart Syndrome requires three operations.
Depending on the child’s condition of course. Besides this major operations, a life time visit to the doctor to get check is really essential. If we think about it, hospital visits became a normal thing. Seeing doctors and nurses and checking up on you became a random routine. It can be exhausting sometimes but what can we do? It is necessary to make the lives of our children better and they can be healthy to do whatever they want for their future.
Our child carry a lifetime condition. It is hard of course. As parents, it is hard as well. It pains us to see what they have been through. It pains us to know that this condition is something might hinders their future. But as parents also, we are here to support them, be with them every step of the way. Their battle is our battle too.
For all parents who has a child with HLHS, we are here. We made this page for us to connect with you. We are here to share our stories and experiences. Even our future plans. We are here readybto listen and ready to know your stories. Please feel free to contact us and feel free to us our community to share your stories. Let’s make a community.. A family to unite.
Welcome everyone to HLHS Warrior Tribe.
Jeni ❤️