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lizbets (@lizbets)

VSD repair surgery for 3 month old baby

Heart & Blood Health | Last Active: Mar 3, 2018 | Replies (6)

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@colleenyoung

Hi @lisbets, Welcome to Connect.
You must’ve been quite concerned yesterday. Did you talk to the nurses or doctor about your baby’s lethargy?

You may be interested in reading the comments alongside this webinar about Congenital Heart Disease https://connect.mayoclinic.org/discussion/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/

In the discussion comments you’ll find other Connect members @pattys @kelovich @nataliebushaw who had/have newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. She is now 26.

How is your baby doing today?

Colleen
Connect Community Director

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Replies to "Hi @lisbets, Welcome to Connect. You must've been quite concerned yesterday. Did you talk to the..."

Hi Colleen,
Thank you for mentioning us in your email. Both Amy and I know very well
what going through Congenital Heart Disease is like. I also copied my
daughter, Amy on this email in case anyone has any questions for her.
Please know that Amy is now 27 years old and she just had her 5th open
heart surgery last year. She had the surgery at Shands in Gainesville, FL
and Dr. Bleiweiss performed the surgery. Dr. Bleiweiss used a mechanical
aortic valve this time, rather than a repair since the repair she had the
year before did not take. The main issue she is having since the surgery
now, is Coumadin, the blood thinner. This drug is very hard to deal with.
Her levels are supposed to remain at a certain level and they most always
are not ever level! She has to watch everything she eats as anyone taking
Coumadin is not allowed to have certain foods containing Vitamin K. Vitamin
K is what clots the blood and obviously defeats the purpose of the blood
thinner. Everything seems to have Vitamin K in it! Even though a repair
would have meant another future surgery, I think Amy would have been much
better off not having to deal with taking Coumadin for the rest of her
life. It’s really tough!
I wish everyone the best of luck and please know that Amy and I both are
here in case anyone has any questions for us.
Thank you,
Judy