Hi, Anthony!
My name is DyMisha Richardson and my husband and I have 8 year old twin girls. One of them has HLHS and is 5 years post Fontan. I can definitely relate to your post and wanted to offer some encouragement. Our daughter, Nia (which means purpose in Swahili) is an amazingly smart, funny, competitive, and beautiful little lady. We had no idea that she would do this well, considering that our twin specialist would encourage us to selectively terminate her in utero. However, our faith, and an amazing cardiology team at Texas Children's Hospital believed otherwise.
Since her Fontan, she has biannual visits to the cardiologist and they continue to be pleased with her heart function. We have been fortunate to not have any additional hospital stays and she is pretty healthy. She loves gymnastics, swimming, watching YouTube kids and beating boys in races. She gets tired faster than the other kids, but she takes breaks when she needs them and goes back at it.
Our heart kiddos are so special and continue to inspire me often. Parenting these amazing kids along this journey can sometimes be scary and challenging...so we have to make sure we are practicing good self-care and reaching out for support when needed.
I'm available if you have any questions or concerns --
DyMisha Richardson, LCSW-S
Original Message------
Hello, my name is Anthony, I am the father of a wonderful 3 year old daughter with CHD. She has Hypoplastic Left Heart Syndrome, we live in upstate New York and she has had her first 2 surgeries in Rochester at Golisano Children's Hospital. At the moment she is doing great, which I cannot thank god enough for this. I was hoping though to connect with other parents or family members of children dealing with similar issues, because I feel like I am not informed as much as I once was, almost as if the fact that her last surgery was the second of the two, and she was only 8 months old, so a few years now have passed by and instead of focusing on the I guess negative, "scary" things, my wife and I have tried to enjoy life with our daughter and keep her healthy doing everything necessary but still I just feel a need to know more and to do more, I know what it is like to worry and be afraid of the next doctor visit, or surgery, and if I could learn something new or help someone going through the very beginning stages of something like this I think it would be helpful. If anyone can message me back and either just to say hello, or to drop some information about CHD, Hypoplastic Left Heart, or anything similar no matter what it is, please feel free to message, I welcome any and all messages whatever I can do to help let me know, if there is info for me to learn or to follow please let me know, I truly appreciate all families that are or, had or will have to go through similar situations, I understand, I send my love and prayers and wish you and your family the best from the bottom of my heart. Thank You.
Sincerely,
Anthony Norkaitis