Anna Maria Island woman to champion congenital heart care with 30K walk

Dr. Michelle Gurvitz, a pediatric cardiologist from Boston who is also one of the nation’s few certified adult congenital heart specialists, remembers a case involving a man in his 30s.

The man had been born with a combination of heart defects, a condition known as Tetralogy of Fallot. Part of the defect causes a hole between the lower chambers of the heart and a heart valve that isn’t formed properly.

At age 3 or 4, the child had surgery to repair the defects.

“He did well and was very successful,” Gurvitz added. “He stopped seeing a doctor in his teenage years and was married and working as an electrician.”

One day, when the man was in his mid-30s, his heart suddenly stopped beating. Emergency rescue crews got his heart restarted, and he survived the near-death experience.

Eventually, when doctors learned about his congenital heart defect, the man was flown to Boston’s Children’s Hospital and entered the hospital’s Boston Adult Congenitial Heart Defect Program.

Gurvitz discovered that the same valve that had been fixed when the man was 3 or 4 was now leaking and had been for some time.

The leaky valve had caused an enlarged heart chamber that, in turn, had caused an irregular heart beat, or arrhythmia, a malfunction of the heart’s electrical system, leading to the heart stoppage and significant heart damage.

“Had we been seeing him all along, we would have replaced the valve sooner, and his heart wouldn’t be so damaged,” Gurvitz said. “He recovered, but he is not back to normal.”

Reaching out to adult ‘kids’ with heart defects

In the 1970s, when heart surgery on infants was new and dazzling, families were often told their child was cured after surgery and should lead a normal life.

But, as Gurvitz’s case illustrates, this is often not true.

In fact, only 5 percent of the 1.4 million estimated Americans born with a congenital heart defect are under the care of an a certified adult congenital heart specialist, a cardiologist like Gurvitz who is specially trained to understand how heart defects in children play out when they grow up, said Jerry Boegler, vice chairman of the Adult Congenital Heart Association board of directors.

Because so few are under care, many will end up in emergency rooms with life-threatening conditions, said Boegler, whose organization is dedicated to get the word out that adult “kids” who were born with heart defects and had treatment should be seeing a specially trained cardiologist.

“It can have a dramatic impact when something goes wrong when not suspected,” Boegler said last week from his Potomac, Md., office.

AMI woman part of fight

Anna Maria Island resident Susan Timmins, co-owner of the Beach Bistro on Anna Maria Island with her husband, Sean Murphy, is part of the fight to get the word out about adult congenital heart defects.

Timmins is a close friend of both Gurvitz and Boegler.

Timmins is also on the board of directors of the Adult Congenital Heart Association.

Timmins and Murphy got deeply involved in this cause because they have a daughter — now in her 30s, the same age of the male patient described earlier — who was born with a heart defect but has stayed in care and his doing fine, Timmins said.

To raise money toward the Adult Congenital Heart Association’s mission, Timmins is taking pledges for completing a 30-kilometer walk back and forth along the length of Anna Maria Island on Valentine’s Day. The public is welcome to walk with her beginning 8:30 a.m. Tuesday. She is leaving from the City Pier in Anna Maria.

“I would love to have people donate to my walk for the Adult Congenital Heart Association, but the most important thing is to get the word out about congenital heart defects,” said Timmins.

She notes that Feb. 7-14 is Congenital Heart Awareness Week.

“We have a growing public health crisis because of the happy success of heart surgeries over the past couple of decades,” Timmins added. “We have ever-increasing numbers of adults with congenital heart defects who don’t realize they need to be in specialty care.”

Timmins is also concerned about the growing number of young women with congenital heart defects who may be thinking of starting a family.

“Far too many are not aware that they need to be in specialty care,” Timmins added.

While there is not a certified adult congenital heart specialist in Manatee County, adults seeking care have several choices in the Tampa Bay area.

People who want to pledge to Timmins’ walk can contact her at susan@beachbistro.com.

This story was originally published February 11, 2017 at 5:31 PM with the headline "Anna Maria Island woman to champion congenital heart care with 30K walk."