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Morgan Keane hams for the camera while her brother Braeden looks at her birth album. Morgan was born with half a heart, no spleen and a stomache on the right side of her body. After open-heart surgery at three days old, she has had numerous complications, but has benefited from the medical advances in treating pediatric heart defects.(Nick Lammers/The Oakland Tribune)
Upon first meeting Morgan Faith Keane, the first thing she will probably reveal — in one breath, excitedly, jumping up and down — is that her fourth birthday is two months away and she will definitely have a pony-themed party.

Then she might run into her family's living room, nearly on tip-toe, pink socks a blur, to show off her My Pretty Pony collection or her massive every-girl's-dream dollhouse.

If you're lucky, she will race to her room, silky black hair flying behind her, and bring back her favorite doll, Casey. She'll lift up Casey's nightgown and show off the doll's long abdominal scars, running vertically and horizontally, stitched with red thread — scars mirroring Morgan's.

These are her "boo-boos." Improbably long and deep scars that serve as a reminder of the three open-heart surgeries and one abdominal surgery Morgan has endured, all before she was 6 months old. She since has had her tonsils and adenoids removed, three heart catheterizations, one seizure scare and hospitalizations for various infections. One more major surgery will happen soon.

Morgan only has half a heart. She was born with Heterotaxy syndrome, sometimes called Ivemark's syndrome, a constellation of heart defects and related abdominal defects. Morgan is missing her spleen and the left side of her heart. She was born with misplacement of the abdomen and intestines.

Her heart has only one ventricle. Just one heart valve connects the lower and upper chambers instead of two.


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Without a spleen, she is immune-compromised and must take penicillin daily to control infections.

This condition is exceedingly rare. About eight in 1,000 children are born with congenital heart defects, the most common birth defect. Of those, only three in 100 have Morgan's condition.

Until recently, her chances of survival would have been slim to none.

But advances in pediatric cardiac care in the past decade have offered new hope to families like the Keanes. Hope comes hand-in-hand with constant worry because there is no road map for longevity.

"We don't know what the long-term prognosis is," said Morgan's cardiologist, Dr. Kishor Avasarala. "Survivors are only now coming into their teen or young adult lives."

Morgan's mother, Angela, said she and her husband, Dan, are focused on making Morgan's life the best it can be today, which means allowing her to attend pre-school, despite very real concerns about contracting infections.

"We decided the way we wanted her to live was she would do what she wanted to do," Angela Keane said. "The advances in medicine have been so great that we don't know what is going to happen."

The Keanes were living on the Hawaiian island of Oahu four years ago, where Dan worked for the Coast Guard, when Angela got her routine 20-week pregnancy checkup.

"We went in to get the sex of our baby," Angela said. "We got a shock."

With no surgeon in Hawaii to perform the operations necessary to give the baby a fighting chance, the family obtained a list of top mainland pediatric hospitals.

Local doctors told the Keanes that their daughter likely would survive only a week even with surgery, and if she did survive longer she would have a poor quality of life.

"They told us about (pregnancy) termination over and over," Angela said.

Instead, the Keanes chose to leave Hawaii — with their 3-year-old son, Braeden, in tow — and move to Alameda where Dan continues to work in the Coast Guard as a lieutenant and naval engineer. Morgan was born at Alta Bates Summit Medical Center and immediately rushed to Children's Hospital Oakland for surgery.

"We put all our faith in it," Angela said.

Three days after birth, surgeons placed a shunt in her tiny newborn half-heart to improve blood flow. Soon after she had another surgery to rotate her intestines and stomach and required another open-heart surgery.

Morgan went home when she was 43 days old. Her weight was that of a newborn — just 7pounds — but better than her birth weight of 4pounds 14ounces. 

"She slept all the time. She never woke up," her mother recalled. "She didn't play."

Angela was terrified she would walk into her daughter's room and find her dead in her crib.

She started a routine she continues to this day. She doesn't enter her daughter's room without first hearing Morgan make a sound — either crying, turning over, sighing or some sort of movement. She listens for the bell on a favorite green worm plush toy.

Morgan improved, slowly. At 5 months, she had another open-heart surgery to organize blood flow in and out of her one ventricle.

Her parents created a photo album of Morgan's time in the hospital. It's an album that Morgan proudly shows visitors.

"They went to see me when I was purple," Morgan explains pointing to one photo of her in a hospital bed, tubes protruding from all over her body.

The next step, coming later this year, is what her physician describes as a "complex plumbing procedure." Called the Fontan, the procedure was developed nearly 40 years ago to reduce pressure on the heart by diverting venous blood directly to the lung arteries. Advances in the past 10 years have made it more successful and lowered the risk of complications, such as irregular heart beats.

Morgan is missing a lung artery, so surgeons will reroute blood flow from Morgan's lower body to the lungs using a constructed Gore-Tex tube.

"We think kids will live long, good lives with this surgery," Avasarala said, adding that the hospital performs about 10 Fontan surgeries each year, like other major pediatric centers nationwide.

Morgan should have more energy and lose a slightly blue color to her fingers and lips. She won't need at-home supplemental pure oxygen — she calls it her "tubies" — when she is feeling extra tired.

Morgan's medical bills have exceeded $3 million, Dan Keane said. Fortunately, the family is insured through his job with the Coast Guard, and they have yet to pay any medical costs.

It's unknown why Morgan developed Heterotaxy syndrome, and why, for instance, her older brother and baby sister, Danica, didn't.

"This is the frontier of cardiology," Avasarala said. "It's definitely something that happens very early. At the first month (after conception) the heart is a fully formed organ."

Morgan could live well into her 40s or beyond, her physician said. She is still small, about the size of a 2-year-old, but should catch up somewhat over time.

She is just the type of spunky, sassy kid who tends to adapt well under difficult circumstances.

"There's that will to survive, some kids are just able to do better and recover faster," Avasarala said. "Definitely Morgan was one of those."

In the meantime, the family continues to take things a little at a time. Morgan won a Make-A-Wish Foundation trip, and they will either go to Disneyland or Disney World before her next surgery.

The Keanes rely on their faith — renewed by her extraordinary ordeal — to see them through, Dan Keane said.

"It's hard not to believe in miracles."