Stories about: congenital heart disease

After three heart surgeries, baby Madison spreads smiles, strength and hope

baby-congenital-heart-diseaseIt was just after midnight on an unseasonably warm Christmas Eve when Morre and Marcus stepped off the plane at Logan Airport. They carried precious cargo: their newborn daughter Madison needed emergency heart surgery at Boston Children’s Hospital.

Madison was the couple’s first child. Like most expectant parents, Morre and Marcus were overwhelmed with joyous anticipation as the pregnancy progressed. They decorated their baby’s nursery and picked out a name: Madison, which means “gift from God.”

But at Morre’s 20-week ultrasound, the couple’s joy was tempered by some troubling news.

Madison had complex congenital heart disease. The prognosis was not good.

Doctors near the family’s home in North Carolina first thought Madison had a disease called hypoplastic left heart syndrome, or HLHS, which means the left side of the heart is so underdeveloped that it can’t pump enough oxygenated blood throughout the body. After a follow-up appointment with a local pediatric cardiologist; however, Morre and Marcus learned there was more to the story.

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The heart and the head: Meeting milestones after pediatric heart surgery

20160616_Silas-13for blogWhen their unborn son Silas was diagnosed with congenital heart disease at 22 weeks gestation, Montana and Michael Green knew he faced a long road. Though their primary concern was Silas’ health they also worried their son might face developmental delays, a common side effect following infant heart surgery.

Silas was diagnosed with double-outlet right ventricle (DORV) , a complicated abnormality in which the pulmonary artery and the aorta — the heart’s two great arteries — both arise from the right ventricle. This disrupts the flow of oxygenated blood throughout the body. DORV is often associated with other cardiac defects, such as a ventricular septal defect (a hole in the heart) or pulmonary vein stenosis (a narrowing or blockage of the passageway to the lungs).

Knowing Silas would need the most advanced cardiac care, Montana and Michael decided to travel from Cranston, Rhode Island, to deliver him at Brigham and Women’s Hospital in Boston. After birth, he was immediately transferred to the Heart Center at Boston Children’s Hospital, where he spent the first six months of his life. During that time, he had three heart surgeries and multiple cardiac catheterizations to correct his various anatomical issues and complications, which included complete atrioventricular canal defect and double outlet right ventricle. Today, at 6 months, Silas’ heart is functioning well, and his cardiac and developmental prognoses are promising.

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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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