I met Caelen’s mom several years ago before she moved to Florida. We connected in a Facebook group for heart moms, because that’s what heart moms do – they connect, instantly. Caelen was born with Hypoplastic Left Heart Syndrome (“HLHS”), which means that the left side of his heart is severely underdeveloped. He essentially has half of a heart, however that description is actually highly inaccurate. Caelen is ALL heart, full of spirit and an old soul, all wrapped up into one little boy. These are the 10 things his mom wants other parents to know about Hypoplastic Left Heart Syndrome (HLHS).
- In hindsight, my child’s symptoms were: I was prenatally diagnosed.
- The specialist who helped us the most: Maternal and Fetal Specialist, and then once born, was our pediatric cardiologist.
- The specialist we didn’t expect to need: GI specialist.
- It took us this long to get a diagnosis: Technically a weekend, as I was seen on a Friday for the sex determination. But when the doctor saw Caelen’s heart, he knew instantly that it was HLHS but wasn’t qualified to diagnose. He had us come back on Monday to see the pediatric cardiologist.
- The biggest financial expense because of this medical condition is: Insurance and deductibles.
- The organizations that helped us: I’ve only recently begun receiving help, but Caring Coalition helps with out-of-pocket prescription costs. Bella’s Angels locally helps me with medical bills and therapies that insurance doesn’t cover.
- I wish my friends and relatives knew: How lonely it can get having a sick child, and how disappointing it is when people stop inviting you to parties and events. I may always have a smile on my face and a positive outlook on things, but I’m always tired and wish I had more help with day to day life.
- Our ray of hope: Caelen! He’s amazing and so happy. With all that he has endured, and continues to endure, he always laughs and smiles and jokes, and he makes me believe in the future with him.
- Our biggest cheerleaders and supporters: My family and friends, as well as local moms with sick children, and many Facebook fans of Caelen’s. Although the Facebook fans don’t truly understand the day to day, their encouragement and positive notes keep me going.
- I wish I had known: How hard having a child with a major Congenital Heart Defect (“CHD”) would really be. The doctors painted this rosy picture of 3 heart surgeries and then life goes on. No one prepares you for what will really happen, and the complications that arise, the attorney fees, breakdowns of marriage and family, and the gradual loss of friends. But I would choose this path all over again just for my child. Being a mom of a CHD warrior is the greatest gift I’ve ever been given, and he’s changed my world for the better.
For those of you directly affected by HLHS, or know someone who is, please follow Super Caelen’s Facebook page for updates on his adventures. He is proof that there is happiness after a tough diagnosis. He still has a long road ahead of him, but with his spunk and his mother’s love and care, I cannot wait to see all the wonderful things in his future.
**Please remember to share this post with any of your friends affected by HLHS or any type of CHD.**
Don’t miss any of the other articles in this series. We address a multitude of medical conditions.