Valentine’s Day is fast approaching, and with it, and influx of pink and red heart decorations. While we hope they remind you of someone you love, WEGO Health can’t also help but hope that they get you thinking about your own heart health. This Valentine’s season, WEGO Health is promoting awareness of a lesser known heart problem, Congenital Heart Defects (CHD).
Did you know that Congenital Heart Defects (CHD) are the #1 birth defect worldwide? And though nearly twice as many children in the US die from CHD than all forms of childhood cancers combined, funding for CHD research is dramatically lower. Isabelle Ouimette, the Chapter Director of It’s My Heart, took some time to share her experience as CHD Health Activist and what inspires her about her community.
WEGO Health: Can you tell us a little bit about your background and why you became an advocate for the CHD community? What made you get involved in the first place?
Isabelle: I was 24 weeks into my pregnancy when I received a phone call from my OB/GYN that there was something not quite right with my baby’s heart, his right side of the heart was enlarged. It was one of the most devastating days of my life thinking what I could have done to prevent this. The next thing I knew was that I was heading to a Boston hospital twice a week from ultrasounds and fetal echocardiograms. Two weeks after the initial shock, I realized that life with my new born son would not be what I had once imagined and I didn’t know how I would deal with so many unknowns. My son, Andre, was born in May 2008 weighing a 8 ¼ lb and looked like a healthy baby boy but only for a few minutes. He had to be rushed to the NICU because he was lacking of oxygen very fast. It was then that the final diagnosis came in; he was born with critical pulmonary stenosis, dysplastic tricuspid valve and an enlarged right atrium. His journey was far from over. He was too little for a treatment to be admitted therefore we were in a wait-and see mode for the next 6 weeks of his life, with a trip into Boston for a weekly echocardiogram. At 6 weeks old, our family was told that Andre might not survive but they will do their best to save him. What should have taken 3 hours took 6, and it felt like a lifetime. This heart procedure was followed by his first open-heart surgery at 3 months old. His prognosis since then is as good as it can be today, we are learning to live each day at a time in between the 6 months cardiologist follow-up appointments. That is part of our new normal life.
I wanted to get involved to be of support for those going through this journey because it was extremely hard to have to gone through this alone.
WEGO Health: What made you decide to bring your crusade online and get involved with It’s My Heart?
Isabelle: A few months after my son’s surgery I felt that more needed to be done in the CHD community because I was yet to have met anyone else that went through a similar journey besides the families we met within the hospital. My first experience connecting with families online was on a CHD community group at Babycenter.com. There, I used to spend hours sharing words of support and learning from others going through this journey. It also allowed me to connect with families in person who would fly into Boston for life-threatening surgeries to have their little ones. Offline, I felt that there was not enough support for families inside the hospitals we visited. I eventually came across a Houston-based national non-profit organization called It’s My Heart (IMH) http://www.itsmyheart.org, supporting and advocating those affected by Congenital Heart Defect. It was started by a mom whose son had to have a heart transplant and sadly lost his battle at 2 ½ years old. Had his condition been detected earlier, he could have had a better chance at survival. She also found there was not enough resources and support for those going through these terrifying times therefore the foundation of the organization. It was exactly what I was seeking to fulfill with my wish to do more for others going through this traumatic journey. In 2010, I was given the opportunity to become the Boston Chapter President of It’s My Heart. In August 2011 I became the Chapter Director of the national organization now helping to setup and support local chapters across the country.
WEGO Health: What’s the best part about leading your online community?
Isabelle: The best part is that this online community is a great tool for communication and for engaging conversation about various topics revolving CHD. It also allows pertinent information reach its target audience more quickly and effectively. It also helps with raising awareness for the No.1 Birth Defect in America, CHD, when no one is talking much offline.
WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?
Isabelle: My proudest moment was when I held my first It’s My Heart CHD awareness walk in 2011. It was a lot of work to organize such an event but it was all worth it. The most challenging was raising awareness for a cause that no one really talks about; it’s not like cancer which gets a lot of attention because of the awareness set forth over the years. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. It is still an uphill battle but l believe that consistency along with social media will help CHD save more lives followed by more funding greatly needed for ongoing research.
WEGO Health: Is there anything you wish the general public knew about Congenital Heart Defects?
Isabelle: I wish the general public would realize how critical it is to have CHD diagnosed early. Early diagnosis means that treatment can be more effective therefore the survival rate. Too many babies are going home without being properly diagnosed. Too many kids in our schools are not being screened for CHD before it is too late. Too many athletes, sportspeople are in the same situation. There is a small non-invasive device called the Pulse Oxymeter (Pulse Ox) that all doctors’ offices and hospitals have and is not used often enough. It monitors the oxygen saturation in the blood and can detect most heart defects. It is a small device. The cost of not knowing is a lot more.
WEGO Health: How do you raise awareness? What can others do to get involved?
Isabelle: IMH CHD Awareness brochures, online presence on Facebook and Twitter, monthly newsletters, as well as blogging at learnaboutchd.blogspot.com. Others can also get involved by becoming an IMH representative of their community by setting up their own local IMH chapter.
WEGO Health: What next for your community? Where do you see the conversation about CHD headed?
Isabelle: The next thing for the CHD community is to legislate the use of the Pulse Ox in all US States. It can be a lengthy process there are a lot of very dedicated parents who are making big strides in their own state. The hope is to see Pulse Ox become the standard right from birth and in all areas where it should be used for prevent unnecessary tragedy. The groups I also follow online about this work are Pulse Ox Advocacy – http://pulseoxadvocacy.com/ ; 1in100 – http://www.1in100.org; Newborn CHD Coalition – http://newborncoalition.com/
WEGO Health: What do you do when you’re not advocating?
Isabelle: When I am not advocating, I find myself researching on other ways to support and empower families affected by CHD. When I am offline, I love spending time with my family, and homeschooling my 3 year old miracle son who reminds me that every day is such a blessing because he could have easily not been with us today. It is thanks to advanced research, medical talents and early detection of CHD that he is able to be a typical 3 year old today.
Thanks so much to Isabelle for her insight and for her work. Congenital Heart Defect Week is from February 7th – 14th; you can check out It’s My Heart and the great work they do by visiting their website www.itsmyheart.org.