This is a very helpful post that I want to pass along:
Hi, I just wanted to update you on some things. My husband, Branden bloom has a story on your site under ascending and descending. Since he passed away I brought my kids to a pediatric heart doctor here in Sioux falls. We found that my 6 year old daughter had a PDA just like Branden did when he was 3 years old.
She had surgery on it and did great! Because of the family history of Branden’s dad and Branden and now my daughter we got sent to a genetic counselor. They got a extensive family history and decided to have 2 genes tested. Four weeks later we found the gene! It’s MYH11 gene that is mutated. Unfortunately Madyson has it. I’m so scared for her outcome down the road. With this specific gene there are only ten people in the world with this!
And my family has 3 of them! I hope this new mutilated gene they have found can become more known because right now it’s pretty new. My husbands aorta was normal in size with both dissections which through doctors off. This is why. with this gene it does not enlarge! It’s silent and very deadly. I am hoping you can let all the doctors that have been on board on your website know what we have found.
I feel this is a huge discovery in the medical field and would love to spread the word and hopefully help with research or whatever my family can do to help save my daughter life!
Thanks, Mindy Bloom.
There are many patients with defined MYH11 mutation. This often associates with PDA/Aneurysm. I have not heard about prior cases with dissection prior to significant dilatation.
I would be happy to speak with this family.