Stories about: BACH

The ride of my life


My muscles are weightless, and my mind is empty. Outside the window, a pair of older Japanese women chat quietly. I close my eyes and breathe in the steam that floats up from the geothermal water beneath me.… knowing I won’t ever again waste a single heartbeat fills me with hope that while the sun is setting on this chapter, it will rise again brighter than ever in my future.

I’m sitting in a natural hot spring in Japan, a centuries-old tradition that is believed to have healing powers. I slide deeper into the onsen in quiet meditation and hope the mineral-rich water is doing what it’s supposed to.

I’m the luckiest girl in the world, I think and then stop. Luck didn’t bring me halfway around the world. A series of events, decisions, and my own two legs did.

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Life with congenital heart disease: Looking back with gratitude, looking ahead with hope

congenital heart disease

Jennifer D’Ercole McKenna, 49, is a patient pioneer — part of a small but growing group of middle-age adults with congenital heart disease who had surgical repair in infancy or early childhood.

“It’s hard for doctors to answer questions about how long I’m going to live. I ask, ‘Will I live until my 80s?’ and their response is, ‘That’s our goal.’”

In 1966, the average life expectancy for someone with Jennifer’s diagnosis, Ebstein’s anomaly, was 37 years (39 for females and 33 for males).

Jennifer shares her lifetime of wisdom with parents and children affected by congenital heart disease.

No1

Stay active and chase your dreams

“I loved taking ballet and gymnastics classes as a child,” she remembers. “Kids with heart conditions can love physical sports or arts and shouldn’t be limited or discouraged from pursuing them.

I wasn’t an athlete, but who’s to say I would have been if I had a perfectly healthy heart? You do what you can handle and it becomes part of your personality.”

No2

Be intentional about your health

 

Congenital coincidences
In her 20s, Jennifer volunteered at Boston Children’s. Whenever she mentioned to the volunteer coordinator that she had congenital heart disease, she was sent to the cardiac floor. One day, Jennifer was rocking a baby and learned he had the same congenital heart defect as her — Ebstein’s.
“He looked so healthy!” she recalls. “His mom came in, and I told her that we had the same thing. She started tearing up. It meant so much to me that I could give her hope.”

“At some point, you have to take over your own health care. Parents aren’t going to be there forever. Your doctors and primary care givers won’t be consistent, either; you have to learn to take care of yourself.”

Jennifer graduated from Regis College in 1991, went on to work in the Boston area and transitioned from her pediatric cardiologist to the Boston Adult Congenital Heart Program (BACH), a joint collaboration between Boston Children’s and Brigham and Women’s Hospital focused on the unique issues faced by adults living with congenital heart disease. Her primary doctors were Dr. Laurence Sloss and Dr. Michael Landzberg, who now directs the program.

 

No3

Have a support system

“Looking out for yourself doesn’t mean you have to go it alone! I’ve often brought my parents or my brothers and now my husband Jim to absorb information and take notes in case I don’t catch everything.  That person can be an advocate for you.”

 

No4

Listen to your body

congenital-heart-disease-wedding-day

 

In May 2014, Jennifer, then 47, was getting ready for her wedding and felt what she assumed were run-of-the-mill, pre-wedding jitters. But when she still felt the rapid beating in her heart after her honeymoon, she decided to see her cardiologists … and  discovered she was having atrial flutter. That meant  abnormal electrical signals were circulating in the upper chambers of her heart. This causes the lower chambers to beat too fast, and the heart struggles to pump enough blood throughout the body.

Jennifer needed surgery urgently. Dr. Sitaram Emani re-routed the electrical pathways in her heart and performed multiple cardioversions (sending an electric shock to the heart) to help restore normal rhythm.

No5

Trust your team

“Recovery was much harder than when I was 30,” Jennifer admits. (She had surgery to close an atrial septal defect, or hole in her heart, at 30.) “But it wasn’t awful! I had so much support from family, friends and the team at Boston Children’s; they gave me confidence.

Dr. Keri Shafer, my primary cardiologist, and the whole group are always there when I call,” she says. “I carry all of their cards in my wallet. I haven’t moved from the area, and I tell my husband we never will! Half a century later, and I still haven’t cut the cord.”

A final note

“This is my normal,” says Jennifer. “I don’t know anything else. I don’t look at it like it’s a bad thing; I look at it as a blessing. You become more empathetic and able to relate to others’ struggles. Everyone has something, and the more you share your story with others, the more you realize how common it is.”

Learn more about the Boston Adult Congenital Heart Program (BACH).

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How a mother’s battle with truncus arteriosus informed her daughter’s

Lauren and Kaylee

As a cardiac patient at Boston Children’s for the past 29 years, Lauren Hoey had learned to thrive in spite of her condition, but she never knew that she would be learning these coping skills in order to teach her daughter, Kaylee, the same skills and attitude.

When Lauren was just 18 hours old, she underwent her first heart surgery for truncus arteriosus, a rare congenital heart disease (CHD) that means only a single vessel arises from the heart. Normally, there are two separate vessels coming out of the heart. In 1983—the year Lauren was born—she stayed at Boston Children’s for more than one month. Most children who’ve had surgery for this condition recover and grow normally, although they are at risk for future arrhythmias, leaky valves and other heart complications. Also, like Lauren, these patients may require additional procedures before they reach adulthood.

Over the years, Lauren had three more cardiac surgeries and back surgery for scoliosis, and was fitted for two hearing aids. Twenty-five percent of babies born with congenital heart defects develop scoliosis. Yet, she didn’t allow these challenges to hold her back—succeeding as a competitive jazz and ballet dancer. She was an active member of the dance team during all four years at Westfield State College in Massachusetts.

“While I knew I couldn’t run up and down a soccer field, I found other sports in which I could participate and still enjoy,” Lauren says. “From the time I was a child, I had to be acutely aware of what I was capable of doing, but I didn’t allow the limitations to hold me back.”

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Heart week: life after pediatric heart surgery

Thanks to medical advances, over 90% of kids born with CHD now live to adulthood
Thanks to medical advances, over 90% of kids born with CHD now live to adulthood
Prior to the late 1930s, if your baby was born with a congenital heart defect (CHD), chances are doctors suggested you save for a funeral instead of college funds or wedding dowries. Morbid but practical advice; at the time, less than 20 percent of pediatric CHD patients lived to see adulthood. But thanks to advancing technology and the brilliant minds and hard work of many dedicated medical professionals, this type of bleak worldview is no longer applicable to most babies born with a CHD. Current data shows that over 90 percent of children born with one of these heart conditions now survive to adulthood.

This incredible success has led to an unexpected new medical specialty: caring for adult survivors of CHDs who experience later-life complications from their original conditions and treatments.

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