Making a Case for Life

Baby’s chromosome defect didn’t keep his parents from fighting for his life, despite doctors’ advice
 

By Christina Capecchi
The Catholic Spirit
Archdiocese of St. Paul and Minneapolis
 

October 6, 2005

Sunlight streams through the living room window as Mary Kellett, 44, engages in an animated game of Peek-A-Boo with her son. She pauses to kiss the tufts of red hair on his head.

For a baby that doctors didn’t expect to live two weeks, 9-month-old Peter has done quite well. And, chromosome defect or not, his mother couldn’t be more delighted with him.

Because Peter had stopped moving in the womb, he was delivered at North Memorial in Robbinsdale through an emergency C-section at 34 weeks — a blue, limp, 3-pound boy that needed immediate resuscitation.

Two days later, an ultrasound revealed that the tiny baby had a chromosome defect called Trisomy 18, a disorder affecting 1 in 6,000 live-born infants in which all or a region of chromosome 18 appears three times rather than twice in the cells of the body.

The disorder is similar to Trisomy 21, or Down syndrome, in which babies develop a third set of chromosome 21. But Trisomy 18 is considered more severe because the 18th chromosome is larger; thus, the mental impairment is more significant, said Dr. Thomas Sutton, a pediatric cardiologist at Children’s Heart Clinic at Children’s Hospital in St. Paul and Minneapolis.

More than 90 percent of babies with Trisomy 18 are born with a heart malformation of some sort, according to www.trisomy.org, and Peter is among them.

The news of his condition was presented very grimly, Kellett said.

Kellett and husband, Don, attend St. Raphael in Crystal. They are the parents of 11 children.

“We were told that Trisomy 18 was fatal — that if babies do live, they only live a couple weeks,” Mary said. “They didn’t acknowledge any survivors.”

But the Internet did. Mary’s older daughters conducted some online research, and soon the Kelletts had found new hope. They read about babies with Trisomy 18 who had reached their 20s, and one woman in Utah reached 36 — a case Mary cites often.

Doctors followed the procedure typical at many hospitals, recommending that no aggressive medical treatment be performed on Peter and that he be given comfort care.

But the Kelletts’ newly-gained medical knowledge and their long-standing Catholic faith compelled them to disagree, a decision that was met by some resistance.

In fact, one doctor told the Kelletts they had to sign a “do-not-resuscitate” form in order to get nursing care, said Don, 44.

The doctor also exaggerated the difficulty of the PDA ligation that Peter needed, Don said, a surgery many premature babies need in which the doctor closes a blood vessel near the heart that closes naturally for most babies.

“[The surgery] was explained to us as a cracking of the ribs, but it only requires a small incision made between the ribs,” Don said.

“[The doctor] did everything under the sun [to discourage further treatment]. We felt disturbed by that. It was very eye-opening, how pervasive the culture of death is. Doctors obviously put people into different groups. They ration the care. The financial expenses exceed the value of the life.”

“Peter was put under the Trisomy 18 umbrella and just written off,” Mary added.

But the Kelletts changed that, said Father Jim Livingston, a chaplain at North Memorial.

“They showed real faith and courage. This couple was pressured to let their son die, but they wouldn’t do it,” he said.

Dr. Sutton, a member of St. Peter in Mendota who worked with Peter, agreed.

“The Kelletts really stood up for him,” Sutton said. “They weren’t going to take no for an answer when it came to taking care of him.”

The Kelletts’ unwavering defense of life probably surprised some of the doctors, Father Livingston added.

“I don’t think they realized that [the Kelletts] had the emotional and spiritual reserve that they do,” he said.

To the Kelletts, who had 10 kids before Peter, their baby’s life has as much value as anyone else’s. He has reminded them not to measure a person’s value based on achievement, Mary said.

“Peter is never going to be a rocket scientist, but he is of no less value. I just don’t think value should be placed on life based on what somebody’s going to do. The value is just because it’s life, and it’s got to be respected and cherished.”

It’s dangerous when a person puts conditions on who deserves expensive medical treatments, Mary added.

“Either all life is valued, or no life is valued. We all have our disabilities and weaknesses,” she said.

That’s a message she’s tried to convey to doctors: “We want to treat him like any other kid and help him reach his fullest potential.”

In less than a year, Peter has made strides.

Aside for a minimal injection of oxygen when he sleeps and the brief, daily use of a nebulizer, he doesn’t have unusual needs.

His heart is stable and functional. And he’s surpassed a host of milestones doctors didn’t expect: taking a bottle, eating baby food, making eye contact and rolling over.

Peter has blessed the family in more ways than the Kelletts ever imagined.

“He’s made us a stronger family,” said his 14-year-old sister, Emily.

“Watching my mom care for Peter has taught me how to be a better mother,” said Ann Farone, 25, who has two kids.

“He’s our little hero,” added Christine, 12, who said she has been inspired to become a nurse because of her baby brother. Her 16-year-old sister, Mary, said she has decided to become a pediatrician for the same reason.

Peter has also taught his two brothers to be gentle, Mary said.

“He’s brought out the best in us,” she said. “Besides our Catholic faith, he’s just the greatest gift our family has been given. He’s put life in a crystal clear perspective. Every day has just become precious.”

And every outcome is up to God, Don added.

“It’s easy in our society to make all these plans to play out over time,” he said. “You feel a sense of control, but Peter puts into perspective that we really don’t have control. You have to take every day as it comes.”

Mary said she doesn’t let the trials that once seemed major shake her now. And she quit her part-time job with the family’s printing company to spend more time with Peter. Waiting five weeks for him to leave the intensive care unit at North Memorial was long enough, Mary said.

“When I was in the NICU, I just dreamed of the day when I could hold him. I joked to the nurses that I was going to superglue him to me,” she said.

To the Kelletts, those blessings cannot be measured.

“We ran into the mentality of, ‘Why spend all this money on this kid whose going to die?’” Mary said. Then you close the door for miracles. You close the door on God’s healing power.”

For those who judge a life’s value, Peter should be seen solely as a societal good, Mary added.

“I think there’s a good argument to be made that these kids are a huge benefit to society. Peter is never going to go out and become a criminal or become a drain on the criminal justice system. The world needs more of these kids. He’ll just continue to be our little hero. And the world needs heroes.”

Mary is hoping to hang onto her son as long as she can.

“I just beg God, ‘Please give me the honor of continuing to care for him,’” she said.

She said she believes the love and prayers Peter has received from extended family, neighbors, fellow parishioners and priests have upheld him.

“Love does heal,” Mary said. “God is limitless. If you just go by medical literature, it can be pretty grim, but kids are not statistics. We have a divine physician who’s much more aware than all the medical professionals down here.”

But when his time does come, Mary said, little Peter will leave a lasting legacy.

“The lessons he is teaching us are going to last forever — long after he is gone.”

Bernardin O'Connor Award