Please consider making a donation to support Sophia in the 2010 American Heart Association Heart Walk.
For the second year, through special arrangement with the AHA. All funds raised by our team will be restricted to funding congenital heart defect research.
You may make a secure donation at the link below.
A NPR story featuring our family.
KCUR: Parents Seek Answers Amid Vaccine Shortage (2009-11-04).
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Originally uploaded by wisdomheart
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Originally uploaded by wisdomheart
I haven’t added a new link in a while. But I just added a link to Baby Henry’s blog in the right column.
Henry just had his first heart surgery (a central shunt) after his mommies Kate and Julie were originally given no surgical options.
His heart defect is very, and I mean VERY, similar to Sophia’s heart defect. Henry was diagnosed with pulmonary atresia with VSD (ventricular septal defect) and MAPCAs (multiple aorto/pulmonary collateral arteries). He also has DiGeorge syndrome.
Henry is home from the hospital and had a very routine and speedy recovery from surgery. Please click over to http://keepingupwithhenryv.blogspot.com/ and offer Kate, Julie and Henry your support.
You may remember, I posted about Alicia going to Washington, DC to lobby congress for Congenital Heart Defect legislation. Well good news. The bill was introduced this week.
From Alicia’s Blog:
We did it…..for now
I received an email saying late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill’s lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944
So what’s next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute – here’s how you do it:
1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses
2) Draft your email.
3) Make your letter personal to you.
4) Send your email. Be sure to include your full mailing address as well as your email address. Don’t use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.
Thank you again for your support.
I would appreciate it if everyone who reads this blog would send email to their senators and representatives urging their support of this important bill.
Valerie, executive director of CHD Families Association, and Jonathon, executive secretary of CHD Families Association, graciously shared the story of losing their son Noah to congenital heart disease in this moving video. The video was presented in front of a thousand people attending the AHA Heart Ball in Kansas City. And generously and courageously introduced by Valerie and Jonathan themselves.
…have tissues handy.
note: click the AHA logo if video window does not open.
Any of you who have been through life saving surgeries with your children know the importance of the surgeon responsible for making the repairs. This is Dr. O’Brien. He has repaired Sophia’s heart three times. We got this picture at the 2009 American Heart Association Heart Ball in Kansas City. We owe this man holding our daughter everything.
Patty and I just attended a presentation by Richard Hopkins, MD given for the benefit of our CHD Families support group . Dr. Hopkins is Director, Cardiac Surgery Research Laboratories at Children’s Mercy Hospital in Kansas City and is responsible for some promising research is heart valve tissue engineering.
Sophia has had a cryogenic homograft conduit placed from right ventricle to pulmonary arteries twice since she has been born. The first time the homograft failed by developing a pseudoaneurysm. This caused a second surgery to replace the failed conduit.
This type of homograft tissue, acquired from human tissue donors, has a problem of becoming calcified over time in children’s bodies causing the valves within to fail within a few years. This makes it necessary that they be replaced frequently throughout a CHD patients life which is an obvious shortcoming of the technology.
The research Dr. Hopkins is doing would take the same donor tissue and strip it of the cells that might cause problems in the recipients body leaving only a “biological scaffold”. This scaffold would be “seeded” with multi-function cells harvested from the patient’s bone marrow. Tissue would then be engineered in the laboratory over days on the scaffold. And when the engineered valve is surgically sewn into the patient, the same multi-function cells would continue to populate the structure of the valve basically growing a valve from the patients own cells. In animal trials the engineered valves do not calcify or deteriorate over time at near the rate as the cryogenic homografts.
This research is being done right here at our hospital and directly affects the type of repair Sophia has had. It is quite feasible that this biotechnology could impact directly the long term quality of Sophia’s life. We were so thankful for this presentation and wish Dr. Hopkins and his research team much success in their endeavors.
There is a little bit of info about the research here.
I HEART SOPHIA 