Imperfect hearts don't slow down loving family

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Cindy Duley of Concord,CA has Lupus sits with her children


Abigal Duley, 2, points at her scar that two heart surgeries have left on her chest.

Imperfect hearts don't slow down loving family
 
 
 
Abigail Duley had her whole heart when she was born, but it was enlarged, and the wrong shape.
She seemed like a normal, chubby baby until she stopped wanting to eat at about 3 months old. Her mother, Cindy, heard her grunting a lot in her crib.

"I thought, gosh, is she a fussy baby or what?" Cindy said at her family's Concord home, her three children busy playing nearby.

At Abigail's six-month checkup, her pediatrician detected a heart murmur. Further testing showed that she had a mitral valve defect, meaning a heart valve wasn'tpumping blood properly, reducing blood supply to the body. She was admitted to the intensive care unit immediately.

Soon Cindy realized her chubby baby was not so chubby after all. Abigail was treated for edema, swelling caused by water getting trapped in the body's tissues due to the heart's failure to pump blood correctly.

Photos from that time show an unhappy-looking baby with a very thin face.

Her condition is rare. About eight in 1,000 newborns have a heart problem, and mitral valve defects are "way down on the list," said Dr. Ziad Saba, Abigail's cardiologist at Children's Hospital Oakland.

Saba and her other physicians hoped to repair the valve in an initial open-heart surgery, performed when she was

10 months old, but it was unsuccessful.

"It's an extremely delicate surgery," Saba said. "We gave it a shot, but unfortunately in Abigail's case it didn't work."

Two months later, surgeons replaced Abigail's valve successfully with a mechanical one in another four-hour open-heart surgery.

The hospital only performs about three to four of these pediatric valve replacements each year.

Five days before Abigail's second surgery, however, Cindy and her husband received more bad news.

Their unborn son, 20 weeks along, was diagnosed with a slow heart beat. Cindy has lupus, an autoimmune disorder, and children born to women with lupus sometimes have this heart condition.

"It was really hard emotionally," Cindy said of having the news come the same week her daughter underwent her second open-heart surgery.

Cindy also has a bicuspid aortic valve, a heart condition affecting 1 to 2 percent of the population. Her eldest child, Madeline, now 5, is perfectly healthy. Abigail's valve defect is unrelated to Cindy's heart condition or lupus, Saba said.

Baby Sam may have to have a pacemaker later to correct the slow heart beat. He is being monitored for fatigue and other symptoms.

Despite everything, the family is doing well today. Sam is now 13months and is happy and healthy. He crawls after his older sisters with a giant smile.

Abigail, now 2years old, must take a blood thinning medication, probably for life, so she has to be careful of cuts and scrapes. The family keeps lots of first aid kits handy. She has a shy smile and idolizes her older sister.

Physicians put in the largest valve possible to reduce chances of Abigail needing a replacement as her heart grows.

"She's like a normal kid, with no fear," her mom said.
 


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