'Clock is truly ticking' for newborn in need of heart transplant

The parents of ailing, 10-day-old Lillian O'Connor say their daughter is a "fighter" who "really wants to make it," but a heart transplant is her only hope.

Lillian was born to Melanie Bernard and Kevin O'Connor of Stratford, P.E.I., on March 9. Her heart has a hole in it, and she suffers from a condition called truncus arteriosus, which leaves her blood short on oxygen.

Doctors treating her at the Hospital for Sick Children in Toronto said she needs a heart transplant within weeks if she is to survive.

Surgery on her heart will not fix all of her problems, said O'Connor told CBC News.  

"She has — I keep saying weeks, but she's already over one week old — so the clock truly is ticking," he said Thursday, speaking from Toronto. "The transplant is her only hope and option at this point."

The baby is breathing on her own in the intensive care unit of the Hospital for Sick Children. The hospital's transplant centre said it is looking for a heart through transplant programs around North America.

O'Connor said his daughter, who weighs 3.2 kilograms and has a heart the size of a walnut, "can only accept a heart from another 3.2 kilogram baby, but … the longer she's around the bigger she gets."

"So that means the bigger the heart that she can accept gets," he said.

Problems detected 6 months into pregnancy

Bernard said her baby's problems were initially spotted six months into pregnancy. She said doctors thought Lillian may have been stillborn, as the womb "was the safest place [for the baby] to be."

"You can tell that she really wants to make it, because … she didn't want to come out," Bernard said.

"I mean, making it an extra four months past what the doctors thought … already is just phenomenal."

"There's no doubt, she is a fighter, and her mom and I are … stubborn, stubborn people, and she gets the best of both worlds from us," said O'Connor. "She wants to be there. She truly does."

O'Connor said doctors are giving Lillian a drug to keep a vital artery functioning. However, the drug will only work for a few weeks, after which the baby will have to undergo painful, invasive procedures involving a machine that functions as a heart outside of the body.

"It's really not our best option, but if it comes to it, it is our only option, and that's good for maybe 10 to 12 days, we're told," he said.