Connect
← Return to Parents overnight in CSICU
Discussion
Comment receiving replies
@alishanjosh, I’d like to offer a few more resources, which you might find helpful to go through, with regard to mitral valve repair.
Let’s start with these 2 Video Q&As with pediatric cardiac surgeon Dr. Joseph Dearani:
– Heart Valve Disease and Surgical Options https://connect.mayoclinic.org/webinar/video-qa-about-heart-valve-disease-and-surgical-options/
– #AsktheMayoMom on Congenital Heart Disease with Dr. Joseph Dearani https://connect.mayoclinic.org/page/congenital-heart-disease/newsfeed/askthemayomom-on-congenital-heart-disease-with-dr-joseph-dearani/
"Going all out to ease young patient’s fears” https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-going-all-out-to-ease-young-patients-fears/ is a Mayo Clinic News Network patient story about a 5-year-old who underwent her third open-heart surgery in 2018.
I’d also like to introduce you to a few Connect stalwarts in all things heart-related; please meet @hopeful33250 @predictable and @thankful @petersen73 @frande @yoanne, who may be able to share some valuable insights.
@alishanjosh, may I ask if you would share a few details about your daughter? How old is she? Was she diagnosed with a valve prolapse or leaky valve?
Replies to "@alishanjosh, I’d like to offer a few more resources, which you might find helpful to go..."
Connect
Hi again! My daughter is 10, and having surgery to repair a leaky valve. In July of 2017, she was hospitalized for Sydenham Chorea with Rheumatic Fever turned into Rheumatic Heart Disease. This all started with an untreated strep throat. Sydenham Chorea is the result of this and causes involuntary body movements, slurred speech which upgrades to being unable to form or complete sentences, being unable to eat and dress themselves and help using the bathroom.
After treatment in the hospital, months of speech and physical therapy are needed to retrain the brain to talk, walk, be able to eat on their own, go to the bathroom on their own and anything else the brain tells the body to do. A year and a half later she is now able to function like a normal child with the exception of reoccurrences of the Chorea but that is treated with a antipsychotic medication. Now it’s time to fix her heart because it’s slowly getting worse and worse with each appointment.
She was born a healthy normal girl with no heart problems but from just one untreated strep throat she had to fight to regain control of her body and has to now fight again to repair and heal her heart. She eventually will need another surgery when she gets older to repair or replace her leaky valve because this current repair will eventually give out again.