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Special Report: Witness A Miracle
(NEWSCHANNEL 3) - Baby Lila is now nearly six months old.
The thing is, her doctors told her parents that she likely wouldn't live past the age of two weeks.
They ask the question all the time, what if they had known before it all started.
"She comes out, and there's no cry; there's no..." Kayse Whitaker's voice trails off. "It got very serious very quickly."
The Whitakers didn't hear anything.
Minute by minute, mother and father waited for a sign of life as doctors rushed to attention--their newborn baby girl wasn't responding.
"You're just so scared; what's wrong with my baby, and nobody wants to tell you anything because they don't know anything yet, and why isn't she crying," she said. "There's a big curtain up in front of your face so you can't see anything; it's terrifying."
Her pregnancy had gone so well, with six near normal ultrasounds, no major issues diagnosed, and no high-risk factors.
She carried her baby nearly to term, with her husband by the side all the way.
As the chaos unfolded in the delivery room, Sean Whitaker saw his daughter for the first time.
"They allowed me to come over and see her and that was kind of shocking, because we didn't have a clue that there was any problems with her," Sean said. "At that point, we were expecting a 7-pound baby there, instead we get this tiny little 4-pound baby, and they have to work to get her breathing."
As crews worked to bring the baby back, the cry finally appeared.
Lila Claire was alive, but was born into this world with some major problems.
On day two, doctors immediately found three holes in her heart, one of which needed to be surgically repaired.
On day six, as Lila struggled to survive, while losing weight, physicians figured out what was wrong, and delivered the crushing news.
Lila, at conception, received an extra chromosome 18, instead of the usual two.
It's a terminal diagnosis.
Lila's condition is known as Trisomy 18. Half of babies who are carried to term with it are stillborn. Having an extra chromosome 18 kills most babies in the first two weeks.
But Kayse looked into her daughter's eyes the day of diagnosis and saw something the doctors couldn't see.
The Whitakers fought for little Lila, and despite a plea from one cardiologist to not put the little one through heart surgery, they went ahead and did it, closing a hole in her heart at 12 weeks.
As Lila recovered from surgery, it all became clear. Baby Lila is one tough cookie.
She started gaining weight, gaining strength, and gaining a new Facebook fan club.
There are still challenges every day, though.
Lila still uses a feeding tube, and there are still some dark days. The numbers are against her, as less than 10 percent of Trisomy 18 babies make it to their first birthday.
For the family, though, time is a gift.
When they put Lila down at night, they wonder what life would have been like without her, the difficult choice they could have, and many other parents have had--whether to move forward.
While the survival rate for the condition, as we said, isn't very good.
There are a very small number of adults with the extra 18th chromosome currently living into their twenties and thirties.