You are a BADASS!!! My son was born with HLHS in 2006, I think its great that you post on facebook and here on youtube. It really helps other kids and parents of HLHS kids (like me), as you know HLHS is pretty rare and the surgeries to allow babies to live are still relatively new to the medical world so there aren't that many great HLHS role models! Your rockin it! Thanks and keep up the great work
Sweet heart I feel so bad for you. My son just passed away two days ago and he was born with HLHS. I am so mad he was taken from me but we had no idea what the future held for him and listening to you I am not sure how I feel now about his passing. I know it may sound terrible but I did not want him to suffer and I am so glad he is no longer in pain but I am heart broken he is gone. I am so glad you are doing ok though. You are seriously an inspiration and I have so much in my heart for you and those like you. I watched my son go through surgeries and struggling and he was strong through it all. I know you must have moments where you are so scared. God bless you sweet heart....
i am 13 with hlhs almost 14 actually. i can relate to all of the things you mentioned especially the first 10. i actually starting crying while watching this, not cause its really sad just cause i have to worry about all these things daily. Watching this also helped me realize what was worrying me so much. i cry every time i hear the word transplant, cause i am afraid of having to get one ever, even though doctors have said i wont need one till in like my late 30s early 40s. one thing i really hate is when people just stare at me when i walk down the hall in school or when i get out of the car when we park in the handicap spot when it is really hot or cold.
You and your parents, yes must mention them amazing !Daughter about to have a pacemaker born with complete AVSD Back twenty one years ago HPLHS was a truly grave one hushed tones at Birmingham children’s Naw parents can be positive that their baby will have a very bright future thanks for sharing Hug your family x
Meg, I love your videos, my son Teagan has HLHS, What is a PVC attack? What causes it? I agree with alot of what you have said. I am always interested in first hand views rather than my parent-to-child view that I have. My son is 4 he will be 5 in March. He can't always explain how he is feeling and sometimes that makes it difficult. We have a local support group called intermountain healing hearts that we get alot of interaction with other kids and families who are dealing with similar hardship
Hi I'm 11 and I have HLHS. These videos help assure me that I can live past expectations of the doctors. They told my mom I wouldn't live through my 1st surgery. My number 1 most annoying thing for me is that people ALWAYS underestimate me
I am 16 years old and have HRHS and i do have to say all of these are true and i kinda laughed at the part where you said people ask you if you love people half as much because i get that all the time.
HI Meghan, I'm wondering how your feeling today. My nephew was born with HLHS and had the Norwood procedure done;. He is now 20 years old and graduated from high school. His heart is starting to fail him and they are hoping to put him on a transplant list. I know a new heart will be tricky given the rerouting of pipes from his Norwood Procedure and it's risky. Just one day at a time for now
I couldn't see what is on your , was that a skin tag? My son has HLHS and he was born with skin tags they checked his hearing and his kidneys and they were fine and I was wondering if it did have something to do with his CHD. How are tour parents coping?
PVC's stand for Premature Ventricular Contractions....which are pretty much abnormal heartbeats that occur separate from the regular heart rhythm. Every person has had them at some point but I have them every day. Some days are worse than others and nothing triggers it, it just happens randomly. I have gone to the doctors and they said there is nothing to be worried about with PVC's, the only time to be concerned is if I have a very rapid heart beat along with them- which I have never had.
Meghan Roswick I don’t think I’ve ever had those, huh. I had 2-1 heart block tho Peter on. I was born with HLHS, VSD,ASD,TGA,Mitral Atresia, and Pulmonary Stenosis.
In 94 i was told my only option for my son for hlhs was transplant. Told he probably wouldnt make it past 2. Had no idea in other states he could have surgery in other states. So i freaked out when i decided to let him go. Horror of my life.
I met a special guy who I really like. And he told about his heart condition. I don’t know what the future hold for us. But I’m really into him, but I don’t want to lose someone I love. I’ve never been in love or in a relationship, and I don’t know how to deal with this or what are his chances to live🥺 I need one help
Hey I have the exact same heart problem u do I have had 3 open heart surgeries up until the age of 3 and I just turned 18 a lil while ago. The doctors told my mom that I wouldn't live past grade 1. I'm also living with HLHS for live
@@mazaet I’m so proud of you. I met someone special a few days ago, he has the same condition and he’s about to turn 24. I’m a bit scared to fall in love and loose him one day, but at the same time I do want to be with him until death do us apart, even as friends. I wish nothing but the best🤎
@@niltongarcia4560 congrats! It’s a very case by case Scenario. But like snowflakes every one’s condition is different even if we all have the same defect, we all have lived different lives. So if something does happen to go wrong be there for them as much as you can. Stay by their side and it will all work out for the best.
