Ten days after Nick DeKlyen buried his wife, he returned to Georgetown Cemetery in western Michigan to inter the daughter whom his wife had died to save, a tragic coda for a family confronted with a heart-rending decision five months ago when Carrie DeKlyen discovered she had a tumor.
She was diagnosed with an aggressive form of brain cancer that is seldom cured and has a poor prognosis. With treatment, the median survival rate is between 12 and 18 months, according to the National Institutes of Health.
Making a decision that has attracted national attention,Carrie, a 37-year-old mother of five, opted out of chemotherapy that could have prolonged her life to save the child she was carrying.
The DeKlyens’ daughter, named Life, died Wednesday — 11 days after her mother. Nick opened his wife’s grave Friday so he could bury his daughter near her mother’s head.
He said he does not understand why God took his wife and daughter from him. He believed his wife would be cured. After she died, he believed his daughter would live. But Nick said his faith has not been shaken.
“I know — absolutely — that they are in heaven together,” said Nick, 39, of Wyoming, Mich., who added that his wife never considered giving up the baby to undergo chemotherapy because of her antiabortion views.
Two wrenching options
Carrie DeKlyen's headaches began in March. Then she started vomiting. A pathology exam yielded a grim diagnosis: glioblastoma, the same cancer that Sen. John McCain (R-Ariz.) is battling. The tumor was removed during surgery in April.
Not even a month later, the couple received two pieces of shocking news. Carrie’s tumor was back — and she was eight weeks pregnant.
They had two options: They could try to prolong Carrie’s life through chemotherapy, which meant ending her pregnancy, or they could keep the baby.
It was a wrenching but obvious choice for the DeKlyens: They would have the child, their sixth. Their other children are Elijah, 18, Isaiah, 16, Nevaeh, 11, Leila, 4, and Jez, 2.
In mid-July, Carrie was rushed back to University Hospital in Ann Arbor. She was screaming in pain and convulsing. That was the last time she was conscious, her husband said.
“They said that she had a massive stroke,” Nick told The Washington Post this month.
Carrie was 19 weeks pregnant. Nick said doctors told him they would do what they could to keep the pregnancy going. For the next several weeks, a feeding tube and a breathing machine could keep Carrie alive.
But she probably would not wake up again — and if she did, she wouldn’t recognize her family. She had suffered significant brain damage from the stroke.
Two weeks later, there was another stroke.
By the time Carrie was 22 weeks pregnant, the baby wasn’t growing fast enough, weighing only 378 grams, or eight-tenths of pound. To survive birth, the baby had to be at least 500 grams, a little more than a pound, Nick said.
Another two weeks went by, and some good news came: The baby weighed 625 grams.
The bad news was that the baby was not moving.
Nick said he was given two options: He could do nothing and hope that the baby began moving and continued to grow. But that meant his child could die within an hour. Or he could authorize a Caesarean section.
He chose the latter, and against the odds, Life Lynn DeKlyen was born at 5:30 p.m. on Sept. 6 — delivered by Caesarean 24 weeks into Carrie’s pregnancy. She weighed 1 pound, 4 ounces. The couple had chosen her name together.
Carrie was buried six days later.
Then Life Lynn died as well, just 14 days after she was born. Nick said he was in the hospital with her when she died.
'She was the most courageous person I knew'
Nick told The Post that faith is helping him and his five remaining children cope with the tragedy.
He said some people have asked him whether his wife would have made the same decision if they knew how short their daughter’s life would be. “I tell them yes,” he said. “My wife never feared death. She was the most courageous person I knew.”
Despite that faith, there is a constant pain. On Thursday, he and his brother “broke down and bawled.”
“God does things we can never understand,” Nick said. “I’ll ask him ‘why’ when I get to heaven. But in the meantime, I am going to raise godly kids.”
Tom Smith, a senior associate pastor at Carrie’s evangelical church, said she was involved in singing on the worship team and the nursery.
He said the family received counseling from the church, which has 10,000 attendees, but church leaders did not encourage or discourage their final medical decisions.
“We encourage people to follow God through their personal convictions through prayer,” Smith said. “Even as spiritual leaders, it’s not our responsibility to make decisions.”
Carrie’s friends described her as trusting in God, he said. “She leaned on her faith. She had peace with the decision she had made.”
The task of being both a mother and a father to his children is one Nick never imagined. Four years ago, he said, he started a vending machine company that he later sold to his brother. Now, he does not have a source of income. But a GoFundMe page has raised more than $174,000, which Nick said will allow him to stay home with his children — cooking dinners, getting them to school and helping the younger ones get dressed.
His 11-year-old daughter, he said, laughing, is “my biggest critic.”
He has promised her he will get better at putting ponytails in the girls’ hair and coming up with matching outfits.
“I tell her, ‘I’m learning here,’ ” he said. “This is all new to me.”
She has told her dad that she wants to go grocery shopping for the family and cook dinner three times a week, he said.
“But I don’t know about that,” he said. “I want these kids to have the most normal childhoods that they can.”
Sarah Pulliam Bailey contributed to this report.