Allison's new cardiologist called today with her MRI/MRA results that show her ascending aorta dilation has not progressed as much as the Echo showed. While surgery will be in her future, no near term surgery! I want to jump for joy at this news! Her cardiologist wants to recheck her on August 5 to keep a close eye on the dilation, and have a close look at her stenosis and her leakage. At that time, they should be able to give us some kind of projection about surgery.
We are looking forward to the August appointment to meet her new cardiologist. The dr who has seen her for 9 years is leaving for another opportunity. I was impressed with the conversation today with the new dr...maybe this change is a positive one. (Allison is impressed b/c her new dr is a woman.) :-)
While we know the day will come when timing for surgery will be upon us, we are blessed that it is not now! I have prayed that we are able hold this off until our Sassy is a bit older. And He answered.
This is actually Allison's Mom posting on her behalf. I have found it difficult to find information, blogs, etc. for children with BAV, so I am hopeful that Allison's story will provide other parents with information, as well as being a communication avenue during her journey.
Allison (we call her "Sassy") has a CHD, Aortic Stenosis Bi-Cuspid Valve. Soon after birth, her pediatrician heard a "murmur", and when this didn't "go away" after a few months, he referred us to Arkansas Children's Hospital Cardiology, where she was diagnosed and has been treated since.
Fast forward to today, 10 years later... Over the past 2 years, Sassy's ascending aorta has dilated at a faster rate than even "normal" for someone with her heart defect. While I am not certain what "her normal" would be, is has grown by 3mm each year and is currently around 3.6cm. She goes for a checkup every 6 months (EKG and echo) and has been on Atenolol for the past year or so. At her last Cardio apt (February), her Cardiologist said surgery is not a matter of "if", it's "when", and that timing is important because of her young age. The ACH Cardio team ordered an MRI/MRA to get a closer look at her heart, which took place 2 weeks ago. The team should have reviewed her results on Monday, so we wait for the call to see what they advise. (Past history has proven that a 2w timeframe usually means a month and after followup calls by me. Trying to be patient!) We are hopeful that we can put off surgery until she is a little older.
Sassy is such a joy. She has a positive outlook on everything. She enjoys tap dancing, art, video games, and playing with her many friends. Her CHD doesn't stop her! While she is "all girl" and doesn't play sports, her CHD doesn't seem to cause any issues/symptoms. The thought of OHS scares me and her Dad. As for now, we are in "waiting mode"...