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Mending the Smallest Hearts
Story Number is : 012612100
By Geraldine A. Collier
Hospital Newspaper

 
Provided
Kaitlyn and Gerard Beleckas and their children, Gerard, Jr., age four, and Reagan, age 2. The photographer is Amanda DiMonda from DiMonda Photography. She is a member of Inspiration Through Art, a non-profit organization made up of photographers nationwide that provide free photo sessions to children with illness and their families.
At age two, Reagan Beleckas looks like any other happy, healthy toddler – unless of course she should pull up her shirt to show you the huge scar across her chest.

“When I tell people she has a heart problem, they just don’t believe it; she looks beautiful, she doesn’t look sick,” said her mother Kaitlyn Beleckas, who admits she never heard of a CHD until her Reagan was diagnosed with it in utero at the 27th week of pregnancy.

“When the doctor said your daughter has a CHD, I’m like what’s that?” That – is a congenital heart defect.

It’s the most common birth defect among the 120,000 babies born in the U.S. each year with structural abnormalities, although other birth defects like cleft palate, Down syndrome or spina bifida are better known.

“Because people are not aware it is the No. 1 birth defect, research is severely under funded,” said Jodi Lemacks, national program director for Mended Little Hearts, an organization devoted to bringing more attention to congenital heart problems.

“Even though they have made great strides in detecting and treating heart defects, there are still a lot of kids dying. In fact, twice as many children die from heart defects than from all childhood cancers combined.”

Sometimes doctors can figure out why a CHD occurs – chromosomes problems, exposure to chemicals, uncontrolled diabetes, etc., but most of the time no one knows the specific reason why, in the first eight to nine weeks of pregnancy, something goes wrong with the development of the heart.

Development of the Heart
“The heart is one of the earliest organs to form in the human embryo, and it starts out as a simple tube that starts pumping and circulating blood throughout the developing embryo almost immediately in the first few weeks of life,” said Dr. Michael C. Fahey, assistant professor of pediatrics at the University of Massachusetts Medical School in Worcester, Ma.

That simple tube gradually increases in length, eventually folding upon itself. A wall, or septum, grows to divide the upper (atrial) and lower (ventricular) chambers into the right and left sides. Four valves made of tissue develop; they keep the blood moving forward through the cardiac chambers, lungs and body as the heart pumps.
“The whole process is generally complete by the ninth or tenth week of gestation,” explained Dr. Fahey. “By the time most people realize they are pregnant, the heart is fully formed.”

So, at some point in the first eight or nine weeks of Reagan Beleckas’s development, her heart did not develop the way it should have.

At 27 weeks, a fetal echocardiogram – done after a suspicious ultrasound – showed the left side of Reagan’s heart hadn’t grown as large as the right side. And there was more.

There were also three substantial holes in her heart.

There was also a narrowing of the aorta – the large blood vessel branching off Reagan’s heart that delivered blood to the rest of her body. Because of that narrowing, Reagan’s heart was pumping harder than normal to force blood through that part of her aorta.
And Reagan’s aortic valve, which should have been in a tricuspid shape, was, instead, in a bicuspid shape because two of the three parts (known as cuspids) had fused together.

Finding Experts
Kaitlyn and Gerard Beleckas made plans for Reagan’s delivery to take place at New York-Presbyterian Morgan Stanley Children’s Hospital/Columbia University Medical Center. But, then the couple, who live on Long Island, found out that the surgeon who was to operate on Reagan after she was born was going on vacation during the month of August – just when the delivery was likely to take place.

So, instead of heading for New York City, the Long Island couple found themselves taking a five-hour drive to Boston where there was a team of pediatric cardio-thoracic surgeons, pediatric cardiovascular nurses, pediatric cardiovascular anesthesiologists, cardiovascular perfusionists (the professionals who run the heart-lung bypass machine) and pediatric intensive care cardiologists – all highly skilled specialists who have seen tiny walnut-size hearts like Reagan’s before.

Taken out of her mother’s arms by the Neo-Natal Intensive Care Unit team just a minute or two after her birth on August 20, 2009 at Boston’s Brigham and Women’s Hospital, Reagan was stabilized, then quickly transferred to Boston Children’s Hospital where she would be operated on six days later.

First Things First
Given the problems with Reagan’s heart, the surgeons at Boston Children’s Hospital decided to first do two repairs on her aorta – one on the arch of the aorta, the other on the ascending aorta – then put a temporary band on her pulmonary artery to restrict the extra blood flow that was coming in from the three holes.

Altogether, the family was to spend eight weeks in Boston – three weeks before Reagan was born and five weeks after the surgery took place. Fortunately, Gerard was able to do much of his work as a school administrator from his computer.
But, that was, of course, not to be the end of Reagan’s story.

During follow-ups, Reagan, then three months old, was diagnosed by a pediatric cardiologist at Columbia-Presbyterian as being in heart failure – the right side of her heart was not squeezing as it should.

Kaitlyn and her daughter were airlifted by medical helicopter to Boston and to Boston Children’s Hospital, leaving Gerard behind to care for Reagan’s older brother Gerard, Jr., then just two years old and diagnosed with a form of autism right around the time Reagan was born.

“When Reagan was in heart failure and had to be airlifted to Boston with Katie, my heart sunk,” said Gerard. “Saying goodbye to the two of them was one of the hardest things that I ever had to do, especially with all of the uncertainty surrounding Reagan’s condition and not knowing if I would ever be able to hold her again.

“Knowing that there was not much more we could do, my son and I hoped and prayed for Reagan and did our best to maintain normalcy, until mommy and Reagan returned home.”

Fixing Problems
At Boston Children’s Hospital, pediatric cardiac surgeons discovered that the band they had put on Reagan’s pulmonary artery had tightened more quickly than they thought it would. At the same time, those three holes she had in her heart were closing, causing pressure to build on the right side of her heart.

An effort to clear the pulmonary artery through a catheterization procedure didn’t work, and surgeons were somewhat pessimistic about Reagan’s chances, but the next day they brought Reagan back into the operating room.

This time the surgeons took the band off the pulmonary artery and also opened up the artery which had narrowed badly. Because of changes in pressure, a large hole on top of Reagan’s heart had burst open, necessitating a procedure to close that.

A follow-up cardiogram showed that blood was flowing well again to the right side of her heart – and it was doing its job. Kaitlyn camped out in the NICU for two and a half weeks until Reagan was well enough to go back to Long Island.
So what lies ahead for Reagan?

“Reagan's aortic valve is small and bicuspid,” said her mother. “The valve is checked every six months when she has an echo. Right now there is a membrane growing underneath the aortic valve. This is called subaortic stenosis. It’s at a moderate level right now so she may or may not need surgery sometime in the near future.”
“We go back in April for a checkup,” said Kaitlyn, unless Reagan demonstrates some

abnormal problem like her color is bad or her feeding changes. “It is stressful, this whole-wait-and-see thing. We’re always trying to figure out what might be normal for Reagan’s age and what might be a sign of something going wrong with her heart.”
Night time brings constant checkups. “I just get really nervous at night,” said Kaitlyn.
So far, Reagan has been able to live an active lifestyle without her heart defects affecting her everyday activities. And she has found one thing that makes life really good – chocolate.

Chocolate makes everything better.

If you or your hospital are using a promising new therapy or new technology to deliver better care to patients and think that it would be suitable for the Cutting Edge column, please email Geraldine Collier, senior staff correspondent, at Gerryc1231-@aol.com.



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