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.
[bctt tweet=”10 things other parents need to know about #HLHS. #MedicalMom #HeartMom #CHD”]
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.
I think how it is to have HLHS child depends on a lot of different things. My HLHS child is 18. I think the biggest difference in how you handle it is what their birth order is. She is my third child. With your first child, you treat even a perfectly healthy one like they are made of glass, the second one, not so much, and the third one, forget about it. If it’s your first child with HLHS, you don’t take them out, you don’t invite people in. In my case, I would have had to get rid of my first two kids to avoid germs. Kids are walking germs. The first day Savannah was out of the hospital, I took her to my sons little league championship game, which my husband coached through all of Savannah’s surgeries and hospital stays. Are we bad parents? No, We just knew she would be just as safe in a stroller at the back of the park as in her own bed. NG tube and kangaroo pump and all. Did we miss Christmas with the family? No. Did I pass her around the room? No. She is way more healthier that my other two kids. Hasn’t missed a day of school in 5 years. Could it be because I didn’t put her in a bubble? Maybe.
You bring up a great point that once you have had other kids you don’t have the luxury of sitting at home in a bubble. But it sounds like you guys were able to be cautiously adventurous – and that it worked out beautifully for you. I hope your daughter is doing well!
Thank you for the message of hope. My grand baby our baby girl will be born in February she will have Hlhs. We are scared of the unknown and what the future will be. Do you have some advice for us as we prepare for her journey?
Best of luck with your granddaughter. I can tell you that a number of my personal friends have children with HLHS – and they are all thriving children. I highly recommend that your family finds a reputable heart center familiar with treating HLHS babies. Remember you have the right to travel, even out of state, to choose the best hospital for the baby. There are a lot of great Facebook groups for heart moms, and they can provide the baby’s parents comfort, support and information. I will be thinking of your granddaughter, praying for her safe delivery and subsequent treatments.