With that extra hour of sleep fortifying you and no Saints game, Sunday afternoon presents an opportunity for you to support a worthy cause, hear some music and grab a little food and drink. The Jack of Hearts Foundation presents its second annual fundraiser at Rock N Bowl (3000 South Carrollton Ave) from 4 p.m.- 7 p.m. featuring music by the Creole String Bean Band and Motown cover group The ELS Band, bowling,silent auction, children's entertainment, food and drinks. For more information about the event, please visit the foundation' Web site.
Proceeds from this event will go towards research into hypoplastic left heart syndrome, a congenital heart defect that is fatal without surgical intervention. The following is an interview from our upcoming issue's Health + Wellness section, and is with Tracey Bryan, founder of the Jack of Hearts Foundation and mother of three-year-old Jack Bryan (pictured), who has the syndrome.
Often the best advocates for increasing public awareness for particular disease are those directly affected by the ailment. Tracey Bryan became one of these people in her fourth month of a pregnancy when she was told her unborn son had a life-threatening heart defect, Hypoplastic Left Heart Syndrome (HLHS). Bryan faced a mortal decision, either terminate the pregnancy or deliver a baby needing immediate surgical attention. She chose the latter, and because Childrens Hospital Boston specialized in the surgery that her son needed, she temporarily moved there.
Today, after three surgeries and hundreds of hours of therapy, her son, Jack, is a happy, spunky three-year old, but his battle is far from over. Just 20 years ago, babies born with HLHS would not survive more than a month, so there is no way of predicting how long Jacks surgical correction will last. As shes already demonstrated, Bryan takes adversity head on, and she and her husband, Steve, have founded Jack of Hearts Foundation, which they hope will bring attention to HLHS and raise money for research into the condition.
What is Hypoplastic Left Heart Syndrome?
It is the underdevelopment of the left side of the heart, specifically the left ventricle, which is the chamber of the heart responsible for pumping blood from the heart out to the body. It means its impossible for your heart to pump blood to your body, and therefore impossible for your heart to deliver oxygen to your body without surgical intervention to correct the problem. If a baby doesnt have the surgery, they will die within a relatively short time, within a couple of days.
How prevalent is this condition in children?
It is relatively rare. The reported incidence is between one or two babies in 10,000 births. Its hard to get exact figures on it, because not enough children have survived this syndrome long enough for there to be a (large-scale) study. A recent study in Great Britain showed that they averaged 200-260 babies a year with HLHS, but I dont know what their relative population is compared to the U.S. Unfortunately, there arent good statistics kept on this syndrome.
Survival rates vary quite a bit, depending on where the child is born?
If you have a prenatal diagnosis like I did, youre expecting to have a child that is cardiac compromised, so you handle them differently at birth than you do a healthy infant. So parents that have a child with this condition that do not know and deliver at any hospital anywhere, and they only find out when the child goes into cardiac arrest, those kids have a worse outcome because theyre compromised already. The problems only known when they crash, so they sustain all the damage anybody sustains if you have a heart attack and youre not resuscitated properly.
This surgery is big and so specialized that its one of the most difficult surgeries that pediatric cardiovascular surgeons do, so not just any doctor can do this surgery. First the kid has to be fortunate enough to born in a place where the surgery can even be done like New Orleans. But if you know in advance and you can have the child delivered in a place where they do the surgery once a week, thats even better.
Jack has undergone three surgeries to correct the abnormality. Will he now lead a normal life?
Yes and no. He has a 30 percent chance of needing a heart transplant sometime in the future. And theres no one who can tell me, or any parent of a kid with this disorder, if theyre going to be alive when hes 30 or 40. There are no 40 year olds (with HLHS) right now in the world, they dont exist, so nobody knows what happens to these kids for the long term. Hes having a pretty normal life now. He goes to preschool, plays with his brothers and sisters and he can do what most three-year olds can do. The overall survival rate to age 5 is 65 percent, and the overall survival rate to age 10 is 55 percent There arent any statistics for how many kids that are alive that are older than 10, but we do know that the oldest kids are just in their early 20s.
Youve dedicated a lot of time studying this syndrome with a great result your son is alive and thriving but thats not enough is it?
No, hes basically alive because of children before him, whose parents allowed them to have surgery. Each time the surgery is done, the method improves. Doctors learn things, improve their techniques and you can see an upward arc in the overall survival rates over the last 20 years. Thats all because of research.
HLHS is considered a rare condition, so its difficult to obtain research dollars, isnt it?
Cardiac defects are the number one birth defect in children. This cardiac defect is one of the rarer ones, but there is a paltry amount of money that is devoted to pediatric cardiology in general, which comes out to less than one cent of each research dollar. And we get way less than one percent (for research into HLHS). In practical terms, it means less kids survive. If you put more money into more research, the survival rate would continue to increase.
Whats the goal of your foundation?
Our goal is to fund one major research study a year, and a research study costs in the neighborhood of $100,000, so our goal is to raise $100,000 a year. Obviously, wed like to do better than that, but I think a reasonable goal is to fund one study a year.