Support has helped the Enlow family cope with their daughter's rare heart anomaly.
By KATIE LIBECCO
VINDICATOR STAFF WRITER
SALEM -- Faith Enlow is facing her sixth heart surgery, and she's only 5.
She was diagnosed with a condition called hypoplastic left heart syndrome -- HLHS -- when she was born.
Faith quietly spends most of the time in the arms of her father, Rick Enlow. She's shy and doesn't say much, but laughs often. She plays with her brother, Ricky, 3, while sister, Rebecca, 12, quietly watches. It's hard not to notice Faith's dark brown eyes and long, curly hair.
"It's hard when you see her now, but in January, Faith was dying," her mother, Geri Enlow, says in a whisper Faith can't hear.
Faith began experiencing heart failure during a January snowstorm. She went in and out of conscious. The right side of her heart, which she relies on, was not working properly.
"We couldn't get to Akron, and we couldn't Life Flight her because of the weather. Akron had to send a transport team. Within five minutes of arriving, I was pulled aside and told that she was dying," Geri whispers.
Doctors stabilized Faith that night and sent her home with little hope. But within weeks, Faith's heart had healed itself.
"Somehow the right side of her heart is fine -- God fixed it. They can't find any other explanation for how it happened," Geri said.
"No one could believe that she was doing so well when we went back two weeks ago. No one thought that she would make it," Geri whispers.
The cause of Faith's rare condition, HLHS, is still unknown.
It is an anomaly where the left ventricle, left atrium, mitral valve and aorta are underdeveloped. Faith's heart cannot sufficiently pump oxygenated blood to the lungs and to the rest of the body.
Children born with HLHS generally have two options. The first is a heart transplant or a series of three corrective surgeries.
Faith's parents chose surgery when she was 4 days old. She had the Norwood operation, which allows the right ventricle to pump blood to both the lungs and the body.
At 18 months, Faith had the Bi-directional Glen operation. It reduced her heart's workload by only pumping blood to the body and allowing blood to flow directly from the body to the lungs.
After the surgery, her right pulmonary artery closed up and became nonrepairable. She was unable to have the third surgery.
Because Faith's lungs were weak and her heart was deteriorating, she became ineligible for a heart transplant.
"The donor would have to be a perfect match, and that's almost impossible," Rick said. "Then they don't know if she could even make it through the surgery."
Faith underwent an operation which gave her a shunt that helps pump blood back to her lungs.
"Doctors are unable to explain how she's doing this well. Doctors said that it was by the grace of God," Geri said.
The Enlows' daughter Rebecca was born with a club foot, which was operated on when she was very young. It was due to a cardiovascular disease.
Geri had another child that was still-born and died from heart defects.
"We've done genetic counseling. There is obviously some sort of link when three of my four children were born with cardiovascular conditions," Geri said.
Faith will return to Akron Children's Hospital Heart Center on Monday for pre-surgery monitoring and tests. If she is strong enough, she will start her sixth surgery Tuesday.
Since her heart has begun to heal itself, doctors will attempt to undo what the other surgeries have done.
"It's her only hope. I just hope that through all of this we'll be able to learn," Geri said. "This might help my grandchildren and other kids. Someday they might be able to stop HLHS in utero."
Statistics cannot be given since the surgery has never been attempted.
"We understand that the surgery is very risky. It's never been done, it's a new territory and a long surgery," Geri said. "But the doctors feel like there's a good chance of her surviving."
The pediatric cardiovascular team at Akron Children's Hospital is lead by Dr. Philip Smith, who has performed more than 2,400 cardiothoracic surgical procedures, and his partner, Dr. Michael Spector, who has performed more than 4,000 such procedures.
Also on the team is cardiac nurse practitioner, Michelle Wilson; chief perfusionist, Thomas Murray; Michael Corrigan, perfusionist; and chief operating room technician, Patricia Werderman.
Faith's pediatric cardiologist is Dr. Chandrakant R. Patel at Akron Children's Hospital.
"He has been an angel," Geri says. "He's just been an absolute blessing to us."
After the surgery, it is hoped Faith will have a normal, functioning heart. Unlike a transplant, her body will not reject the heart. And, unlike most children born with HLHS, Faith will be on few medicines.
The only difference will be Faith's left pulmonary artery, which will be artificial.
"Faith is a miracle. Doctors never expected that they would be able to do anything to help her," Geri said.
"Faith loves to color, paint and draw. And she loves to do puzzles. She loves anything artistic. She can sit and color for hours," Geri said.
"She can't do a lot of what healthy kids do. She gets so out of breath. Her heart is beating twice as fast as a normal person. She just doesn't have a lot of energy,"
The family has received support from Old North Church, Canfield, where they attend regularly and GRAFITI Tools in Canfield, where Rick works.
Faith enjoys getting cards in the mail and has received almost 300 so far. Many people have sent coloring books and art supplies.
Geri stays at home with the children and home-schools them. Faith was able to complete kindergarten at home.
There are many informational Web sites for families coping with HLHS. Hope for Children With HLHS (www.hopeforhlhs.com) and Hypoplastic Left Heart Syndrome Information Web page (www.hlhsinfo.homestead.com) offer support and resources for families coping with the heart ailment. Little Hearts Inc. (www.littlehearts.org) provides help to families dealing with all congenital heart defects.
"All of us, even the doctors, have learned you can't always go by standards," Geri said. "There are so many things that have happened that made no sense, but that's the way Faith has always been."4