If you don't have to clear phlegm out of your one year old baby's breathing tube every 3 hours--a baby who had a 10% chance at best of even making it to his first birthday, mind you...maybe there a few blessings in your life:
Jennifer Lo Tempio hasn't forgotten the first time she heard her
son's diagnosis. She was seven-and-a-half-months pregnant with Danny
when her doctor called her at work.
"He's incompatible with life," the doctor said. "There's nothing anybody can do."
chromosomal abnormality, Trisomy 18, also known as Edward's Syndrome,
affects about one in 2,500 pregnancies in the U.S. Affected babies that
survive their birth usually face complex, life-threatening medical
conditions. Only 5% to 10% of babies born with Trisomy 18 live past
their first birthday.
Jennifer shook her head, remembering.
It's a few weeks before the party and the family is at their home in Delta Township.
They say Danny's first year was fraught with staggering challenges.
spent 21 days in the neonatal intensive care unit at Sparrow Hospital
after he was born. He had a smaller than normal cerebellum, one kidney
and three holes in his heart. Two have since closed and doctors expect
the one that remains to close on its own eventually.
A breathing tube was placed in his windpipe through a surgical
opening in his neck. It allowed him to breathe easier, bypassing his
mouth and nose altogether, but it came with stipulations.
has to be cleaned two to three times an hour, whenever phlegm or mucus
begin building up inside it. The process is quick, a few seconds, but
it's one of the reasons Danny needs around-the-clock care.
James, a disabled veteran, is his constant caretaker.
"If he wasn't able to stay home, I would not have went back to work," said Jennifer. "One of us has to be here with Danny."
An in-home nurse stays awake with Danny for eight hours at a time, five nights a week.
when the couple sleeps. On the weekends they take shifts sitting with
Danny. The tracheotomy renders his cries silent. Monitors alert them to
problems with his pulse or breathing.
Jennifer and James watch for
warning signs -- bad coughing fits and ragged breathing. In August,
Danny came down with pneumonia during a trip to Mott and he spent three
days in the hospital. Last month, breathing problems led to a five-day
stay at Sparrow Hospital.
"She will say, 'My gut is telling me we have to go into the emergency room,' " James said. "I say, 'OK. Let's go.' "
"I've learned if you get that gut feeling, you listen," Jennifer said. "It's there for a reason."