Against the odds: Delta infant makes it to first birthday

DELTA TWP. — One year, 365 days.

Danny Lo Tempio's first birthday party is what you'd expect.

Colorful, helium-filled balloons — yellow, green, pink and blue — are placed around the room in bunches, their strings dangling. Gift bags, filled with tissue paper and wrapped boxes with bows set on the center table top. Yellow streamers are everywhere.

The cake is still in its box. A depiction of Simba from "The Lion King" smiles atop the icing.

"Happy 1st Birthday Daniel," it reads in yellow, sugary script.

The guest of honor weighs just over 16 pounds and is 25-and-a-half-inches tall. Danny's blue eyes drift shut as his aunt, Dana Jones, who traveled from Iowa to be there, holds him.

He dozes amid the noise as guests arrive, people chat and children begin bowling at Spare Time Entertainment Center in East Lansing.

"This is a big celebration," Jones said, rocking him. "Danny's a big deal."

He wasn't supposed to be here.

By all accounts the little boy who wasn't expected to live is still beating the odds.

Meeting challenges

Jennifer Lo Tempio hasn't forgotten the first time she heard her son's diagnosis. She was seven-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."

The chromosomal abnormality, Trisomy 18, also known as Edward's Syndrome, affects about one in 2,500 pregnancies in the U.S. Affected babies who 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.

Danny 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.

At the hospital nurses and doctors checked Danny's vitals every half hour to hour.

"He got a lot of attention. Somebody was always there. Somebody was always awake with him," Jennifer said. "This was a very medically fragile child, even though he was doing great."

He came home with oxygen tanks and a vital monitor, weighing four pounds, 10 ounces.

Leaving the hospital with Danny was a huge relief for Jennifer and James. It was also terrifying.

"I'd spend days messing with the little sensor on the pulse oximeter," James said. "I wanted to see his pulse and everything, to know it was okay."

Struggling for air

Breathing problems are a real concern for Danny and other kids with his disease.

Dr. Glenn Green, a pediatric otolaryngology specialist at CS Mott Children's Hospital in Ann Arbor, said Danny is one of about 20 patients he has treated with Trisomy 18 in the last five years.

Many of them have struggled with severe breathing problems that can lead to suffocation.

Common colds and the flu can be lethal, Green said.

"Historically all these kids die before age one," he said.

But Green said children with Trisomy 18 who get proper medical care can live longer lives. His oldest patient with the disease is six.

"Giving these kids medical care makes it possible for them to live past a year," he said. "We know that there are things that can be done."

At three months, Danny began struggling to take in air.

"He would cry and all the sudden he would turn blue," James said. "Then he'd start rolling his eyes and pass out. It was a scary deal. We had no idea why..."

Neither did doctors. It happened twice before they placed Danny in a sleep study. He was diagnosed with obstructed sleep apnea, caused in part by a malformed palate. His airway was partially blocked. Danny had been choking in his sleep.

In February Green removed his tonsils. But hours after the surgery, when staff attempted to take the tube out of Danny's throat that had been placed there to help him breathe during surgery, he struggled to exhale fully.

Six days later when his doctors were ready to try removing it again, both Jennifer and James were there watching as things took a turn for the worse.

"There were five surgeons there, nurses. We had a room full of people," Jennifer said. "They took the tube out and he started crying and he did one of his spells."

Danny stopped breathing.

"I'm sitting there watching them do chest compressions on my four month old," Jennifer said. "It was very hard."

Two days later Danny received a tracheostomy. A breathing tube was placed in his windpipe through a surgical opening in his neck. It allowed him to breathe easier, by-passing his mouth and nose altogether, but it came with stipulations.

The tube 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.

That's 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, 'Okay. Let's go.'"

"I've learned if you get that gut feeling, you listen," Jennifer said. "It's there for a reason."

Writing his own story

There is no road map, no timeline Danny is expected to meet. Only time will tell what his challenges will be.

Danny hasn't crawled yet but can roll across the floor. He scoots using one arm but doesn't sit up on his own yet. He struggles to grasp things with his hands but works with physical therapists three times a week.

"They're helping him to strengthen his tummy muscles and try to help his coordination with his hands," said Jennifer.

Speech therapy will come later.

Jennifer and James believe he'll stand and walk. They see several signs that give them hope, like Danny's attempt to grab a bottle when he's fed and his mobility so far.

Green agrees with them.

"It would not surprise me if he does," he said. "We're finding that with therapy and some interventions a lot of these kids are able to do more than we thought they could."

Jennifer said hope, in many ways, sustains them.

"I see what he can do and I tell myself, 'He's going to crawl.' I'm rooting him on. My hope is that he'll be able to walk and play and just be a happy little boy."

Danny is strong-willed, loving and up to the challenges in front of him, she said.

"He's never going to be Michael Jordan," James said "We get that, and that's okay. He's Danny and whatever his level is, that will be fine because he doesn't know any better. He'll never know any better. He'll always be just as happy as we make him, so we're going to make him as happy as we can."

At his party Sept. 26, family and friends took turns holding Danny. He obliged, tracking the colorful balloons in the room with his eyes, rocking his head rhythmically back and forth and offering smiles from his place in their arms.

Jerri Lo Tempio, his grandmother, gladly waited her turn.

"It was hard to hold on to the hope that he would be what he is today," she said. "He looks around and all the sudden catches your eye and gives you a big smile. It just melts your heart."

Contact Rachel Greco at (517) 528-2075 or rgreco@lsj.com. Follow her on Twitter @GrecoatLSJ.

About Trisomy 18

•Trisomy 18, also known as Edwards Syndrome, is a condition which is caused by an error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair, an extra chromosome 18 results in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth.

•The condition occurs in about 1 out of every 2,500 pregnancies in the United States, and in about 1 in 6,000 live births.

•Studies have shown that only 50% of babies who are carried to term will be born alive.

Information taken from the Trisomy 18 Foundation. For more visit www.trisomy18.org .