Posted: Feb 14, 2011
As the science supporting future stem cell therapies evolves, we’re
learning more about how stem cells may be used to repair damaged cells in
several areas of the body, including the heart and the brain. Millions could
one day benefit from this emerging research – including people living with
congenital heart defects. Approximately 36,000 babies are born with a
congenital heart defect each year, making this the most common birth defect and
the number one cause of death from birth defects during the first year of life.[i]
In honor of Congenital Heart Defects Awareness Day – conveniently
coordinated with another famous heart holiday, Valentine’s Day – we recently
sat down with Jodi Lemacks, National Program Director for Mended Little Hearts,
to learn more about congenital heart defects, the services offered by her
organization, and why the need for ongoing research is great.
CBR: Tell us about Mended
JL: Mended Little Hearts is a program of
our parent organization, Mended Hearts, which offers services to heart patients
through visiting programs, support group meetings and educational forums. At Mended Little Hearts, we offer the same
types of services to parents of children who have been diagnosed with a congenital
heart defect. We currently have 60 community groups in 25 states.
What kinds of support are parents
looking for after their child is diagnosed with a congenital heart defect?
They’re looking for information
and community. My son was diagnosed with a congenital heart defect in utero
during a 20-week ultrasound, and at the time, I didn’t know where to turn. There’s no cure for congenital heart defects,
which can be really scary for parents. Having
a forum for parents to find support and resources can be very beneficial. We
see parents walk into our support groups for the first time, and you can sense
the relief that washes over them when they are able to talk to other parents
facing the same issues.
What services do you provide to
In addition to our support
groups, we offer educational programs in areas like stress reduction, pediatric
cardiology and nutrition. We also work to connect parents to early intervention
programs, and provide care packages for families whose children are in a
hospital. Through our blog, we also try to educate parents about the latest
clinical trials and research that may be relevant to them.
What does the research landscape
look like for developing future treatments or even a cure for congenital heart
JL: According to the American Heart
Association, nearly twice as many
children die from congenital heart disease in the United States each year as
die from all forms of childhood cancers combined, but according to the American
Heart Association, only one-fifth the amount of research dollars are allocated
to studying these heart defects. So the need is great. Fortunately, there’s a
lot of promising research on the horizon, and there may be more that we don’t
know about yet. In my opinion, a major breakthrough is as likely to come
through stem cell research as it is anywhere else.
You can learn more about Mended Little Hearts at their website, www.mendedlittlehearts.org.