Hi. I intro'ed awhile back. My 4 month daughter has left aortic stenosis. The last time we saw her cardiologist was in January. Things looked promising. We saw him again on Thursday and had an echo. Turns out that there is a significant amount more leakage and her heart is enlarged. You wouldn't ever tell by looking at her. He is having us come back at the end of April to do another echo and to come up with a plan. She will for sure have surgery by the end of the summer. Possibly earlier if the echo shows that things have gotten worse.
I'm a wreck. I'm terrified. I can't stop crying. I'm trying to keep my mind off of it but I can't. My SO is so amazing. He is being so strong for us and for her and I feel like I'm not being strong enough for them. Can you give me your experiences, please? I'm thinking that it might help.
Re: Valve replacement - Heart moms
At her 4 month appointment a month ago the dr heard a murmur (previously undiagnosed) which turned out to be severe pulmonary stenosis. We tried correcting it through a catheter procedure but it didn't work. Headed to surgery on April the 9th.
I feel the same as you, from looking at her you wouldn't know she has health issues.
I just take comfort knowing she's going to feel so much better.
C had a cath procedure done within 24 hrs after birth. Her aortic valve was completely closed.
@dmc1156 How are you doing now that you are 7 days from surgery? When was your daughter born?
This is a picture of Camille from two days ago. It's one of my absolute favorite pictures.
I know it's not the same proceedure, but there aren't a ton of heart mom'ss on here. I wanted to tell you to check out the children's hospitals near you and go to the best one around. Then put your faith in the doctors. It's scary, but this is what they do everyday. They saved my son's life! He's now 11, and so fit! He went from this tiny boy to one that everyone remarks is so big for his age. He plays football, snowboards, ice skates, plays baseball, swims, plays soccer, and is an all-around athlete!
Last time we were at the cardiologist, I heard he might need a valve replacement in time. It was the first time I heard that, and I was right back to worrying. I knew he still has an enlarged, overworked heart from his first 7 years and will be at risk for an early heart attack, but this was the first I heard that his bicuspid aortic valve may need replacing while he's still relatively young. They also told me that in his teen years, we may have to start restricting his physical activity and not allow his to lift weights! because those things might lead to an earlier need of the surgery. I don't know how we'll do that, since he is so physical. I get sick every time I think of it and wonder if it will be better to just have the surgery when he's younger so it doesn't restrict him from his passion for sports.
Take heart. You have found the problem early enough, and can now work on fixing it and nursing your sweet baby back to health. Trust the doctors, and take one step at a time. Nothing anyone says will make this easy, but know you are doing all you can to help your sweet darling.
My DD had her heart surgery at 8 days old and is doing great. She will not need any other heart surgeries in the near furure (maybe when she is 60), and will only need to see a cardiologist on a yearly basis.
Prayers for you and your little girl.
She was born 10.29 at 37 weeks.
We kind of received a blow last week when we found out she has a genetic disorder but for now we are just focusing on the surgery.