Surgery Mends 'Special Heart'

Surgery mends 'special heart'

By CAROL HOPKINS , Of The Daily Oakland Press

02/20/2004


	Sheila Ruma plays with her son Josh, 6 months, as his father, Matt Ruma, sits with their younger son, Zach, 2, in their home in Pontiac Daily Oakland Press photo/JOSE JUAREZ

February 20, 2004
"I wondered what happened to getting married, having kids and just watching them grow up."
Matt Ruma

Last year, when Sheila Ruma went in for an ultrasound 20 weeks into her second pregnancy, she and her husband, Matt, heard the technicians begin arguing.
"We knew something was wrong," said Sheila, 26, a Pontiac resident.
The couple soon learned their unborn baby son had hypoplastic left heart syndrome (HLHS), a condition in which the left side of the heart is underdeveloped.
In a normal heart, blood flows from the right atrium to the right ventricle, where it is then pumped through the pulmonary artery and into the lungs to be oxygenated. Blood then flows back to the heart via the left atrium to the left ventricle, which pumps this oxygenated blood through the aorta and out to the body.
In HLHS babies - generally boys - the heart's left side is underdeveloped, so it cannot sufficiently pump oxygenated blood out to the body.
"We were shocked," she said. The Rumas' first son, Zach, 2, had been born healthy.
Matt, 34, who owns a software company, said he remembers his surprise.
"I wondered what happened to getting married, having kids and just watching them grow up," he said.
The Internet-savvy couple did their homework.
"By day two, we knew what we were up against," Matt said.
They learned that Ann Arbor's University of Michigan Congenital Heart Center specialized in helping HLHS babies. The Rumas met with a surgeon, Dr. Edward Bove, and found out they could choose either a three-stage surgical repair or a heart transplant for their baby.
They opted for the surgery.
"We found out our baby was a perfect candidate," Sheila said.
The open heart surgeries - rebuilding the heart so that the right side would handle the pumping - would involve three operations over the first two years of life.
During her pregnancy, Sheila learned all she could about HLHS, including finding Hearts of Hope, a group of area mothers with HLHS babies.
"I talked with them and got to see their children running around at a picnic. Just to see those little boys running around was great."
Little Joshua was born without complications in August.
"He came about two weeks early," said Sheila, who said the baby was 6 pounds, 4 ounces. "As we drove to Ann Arbor, I worried I might have him in the car."
The couple saw their new baby briefly, but he was whisked away to be placed on medication to keep a special heart valve open.
After months of praying for their child, Matt said he was relieved to know the first surgery was coming up soon.
"It was 'go' time," he said.
The first surgery was at Ann Arbor's C.S. Mott Children's Hospital. In simple terms, the surgery made the right side of the heart do all the work, both pumping and receiving, the Rumas explained.
The little boy was in the hospital three weeks, then was sent home with four special medications.
To lessen the chances of infection or illness, the Rumas were told to keep him away from crowds.
"Our relatives would come and peek at him through our front door," Matt said.
The second surgery to alleviate pressure on his right chamber was performed late in January. Again, Joshua came through with flying colors, his parents said.
Today, Joshua is 6 months old and weighs 16 pounds - a happy, smiling charmer. The Rumas, members of Utica's Detroit Church, credit God with helping him pull through.
The third and last surgery will come when Joshua is between 18 months and two years old.
"He's a normal baby," Matt said. "Down the road, he's not going to run a marathon or do strenuous sports. He's not cured, he's fixed."
Joshua's big brother, Zach, sums up his brother's condition:
"He has a special heart."

More information February is Congenital Heart Defect Awareness Month The Internet has many sites to help parents who have questions about Hypoplastic Left Heart Syndrome (HLHS). Try www.hlhsinfo.homestead.com, www.med.umich.edu/cvc/mchc/parhyp.htm or www.tchin.org, the congenital heart information network.

What causes HLHS? The causes of HLHS, and most heart defects, are unknown. It could be genetic, or possibly a genetic problem that is triggered by something in the environment. Since you didn't do anything purposely to harm your child, it is certainly not your fault. It is better to focus on how and where your child will receive the treatment for HLHS, rather than worry about the cause.

What are my chances of having another child with HLHS or another heart defect? According to the American Heart Association, the general population's chance of having a baby with a heart defect is about 1 in 100 - 1 percent of all babies born have some sort of heart defect. These defects can range from very minor things to serious matters requiring surgery. Most estimates are that once you've had a baby with a heart defect, your chances increase to about 2-3 percent. Again, this include even very minor defects that would not require surgery. Ask your doctor or genetic counselor to discuss your particular situation to see if this is applicable.