asymptotex

My nine month old son has a bicuspid aortic valve with progressive dilatation of the ascending aorta. He will be having open heart surgery in the not too distant future (1-18 months) to replace the valve and likely replace most of the aorta depending on the fragility of the tissue.

1) Was your aortic valve replaced? Was it the Ross procedure (pulmonary valve -> aortic valve; xenotransplantation for the pulmonary valve) or an artificial valve?

2) How was your ascending aorta repaired? Was a cadaverous aorta used or were they able to preserve your own tissue?

3) With the incisions in your groin I would assume that you had catheterization, but if they already had direct access to your heart I don't see why they would need access through the femoral arteries? Can you explain more about the secondary incisions in your groin and lower leg?

4) What has been the most difficult/painful/uncomfortable part of this process for you?

5) Do you have any advice for a parent of a child with the same heart defect?

6) Has all of your immediate family been screened? There is a very high incidence of defects of the aortic valve in first degree relatives with a defect. In our family, we found that all of the males on my mothers side either had passed away as a result of aortic dissection, or were found to have a bicuspid aortic valve on examination.

Thank you very much for doing this AMA. I am so glad you are doing well. You have overcome incredible odds and been through the wringer I'm sure, and I hope things become medically boring for you soon.

I'm probably too late to the thread to catch you, but here goes nothing!

I know this isn't your field of expertise specifically, but can you discuss the applicability of this technology to cardiac repairs?

Our son (16 months) is awaiting his first OHS to attempt to manage an severe aneurysm of his ascending aorta (related to a connective tissue disorder). The primary reason for delaying surgery at this point is the growth limitations associated with aortic root replacement surgery. That puts us in the profoundly distressing position of watching as his aorta dilates progressively towards dissection or rupture (at a complete unknown value in a child so young) as the risks associated with surgery still outweigh the risk of waiting.

Eventually is it conceivable that an artificial aortic root repair could take place with a 3D printed part such as you describe? Also, how functional can this technology be in moving tissues like valves? Our lovely little person also has a bicuspid aortic valve which will likely eventually need replacement too and the cadaver/xenograft options aren't ideal.

Thank you so very much for the work you are doing. Pediatric medicine has become my life since our little person arrived, and I have the utmost respect and gratitude for the people like you who keep him alive.

Which race?

As someone entering the EMS field for the first time, I have heard more complaints and horror stories about nursing homes than any other aspect of the job. Nursing homes have a terrible reputation for institutionalized neglect and substandard medical care. The relationship nursing home staff have with EMS and hospital staff is typically hostile at best.

Can you tell me about your experience with EMS? Do you have generally good or bad experiences with paramedics? What should a paramedic know about you and your job that would help to understand your position better?