The Lincoln mom had 20 minutes to share her family’s story.
Kendra Haifley stood at a podium in a conference room in Bethesda, Maryland, before the director of the National Institute of Child Health and Human Development and her council.
She thanked them for inviting her. She told them she had always dreamed of being a mother.
She told them her children’s names: Roman, Isabel, Silas, Stone.
She told them: I remember hearing stories of mothers who had lost their children and thinking how do they go on? How can they survive? I’m standing before you right now and I will tell you it is not by chance. I am here so that no family has to fight alone and so that someone else doesn’t have to go through the pain we have ...
Before she began, a Yale researcher took his turn, talking about early childhood deaths from birth defects and rare disorders and the importance of research.
The researcher had a name for the mother’s contribution to his presentation: Voice of Patient.
The voice of a family — a 34-year-old mother, Kendra, and a 38-year-old father, Damon, their son Roman, 11, their little boy Stone, 2½, and the daughter and son they had lost, 2-year-old Isabel in 2014 and 19-month-old Silas, three years later.
Kendra had 20 minutes — 3,825 words — to be their voice.
My daughter Isabel and my son Silas were both born perfectly healthy ...
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What led to that mid-September day stretches back more than two years.
It was May 18, 2017, hours after Silas died in his parents’ arms at Children’s Hospital, when a doctor stopped to give Kendra and Damon a hug as they gathered their son’s belongings and asked if they would be willing to be part of a research study at Yale.
The parents had sent DNA off before, once while in Denver for a study on a type of lung disease that had sickened both Isabel and Silas. And once for a study at Harvard, although they never knew what, if anything, researchers had found.
This time, the samples from all six family members were sent to New Haven, Connecticut, and the Pediatrics Genomics Discovery Program at Yale’s School of Medicine.
And then the Haifleys went home and laid their son to rest, celebrating his short life with a memorial service and a book drive. They nurtured Stone, the biggest of their four children, born the day before his brother died. A chubby infant who grew and thrived.
And as they navigated their changed life, they wondered: What about Stone?
Isabel and Silas had been born healthy, but had fallen ill as they neared their first birthdays, with an undiagnosed disorder that ravaged their lungs. Would that happen to Stone?
And what about Roman? He’d been sick as a toddler and preschooler, afflicted by asthma.
“The question was always there with Roman. And he wondered, too.”
Then in early April 2018, the phone rang. Their geneticist in Omaha had the results from Yale. Did the Haifleys want to know what doctors had found?
How much did they want to know?
Testing had shown that she and Damon both carried a mutation on the same gene. Damon’s had been found in 1 in 10,000 people. Kendra’s had never been seen before.
Isabel and Silas had received both mutations. Roman had his mother’s. Stone carried neither.
“It was like the biggest weight lifted off my chest,” Kendra said last week. “Just knowing that we hadn’t missed something, that we hadn’t done anything wrong.”
And knowing that neither Stone nor his big brother would be afflicted, that they didn’t have to watch and worry.
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Soon after, the parents participated in a video conference with the Yale research team that had isolated the mutation. They learned more about the work of the genome project.
Then Roman had an idea. His 10th birthday was coming and instead of presents, he wanted to raise money for more research.
“Roman was so touched,” Kendra says. “When he found out he wasn’t going to get sick and his brother wasn’t going to get sick, he wanted to do something for them.”
Kendra posted his wish on Facebook and his goal: $1,000. When the money was gathered, he sent it off to Yale.
A letter came back to Lincoln, signed by Dr. Mustafa Khokha, a Yale University School of Medicine professor and the director of the genome project.
“Dear Roman … It is my pleasure to announce that you have been awarded the title of Genomics Hero for exemplary service to your family.”
Roman’s birthday money would help more families across the nation, the doctor wrote.
“Your gift and generosity has warmed our hearts, filled them with joy, and strengthened our determination to keep moving forward to help more people and to find more answers.”
Gifts arrived at the Haifley house, too. A Yale sweatshirt and a football, among them. And eventually, an invitation to visit Yale’s New Haven Children’s Hospital and tell their story in a promotional video — not only to inform potential funders, but to engage medical students in the importance of research.
Last October, the family spent a week on campus and this summer Kendra got another call from Yale. Would she want to go to D.C. and speak?
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Dr. Khokha is the director of the Pediatric Genome Project at Yale’s School of Medicine.
He’s the doctor who hand-wrote a thank you letter to a generous 10-year-old boy and the doctor who spoke in the conference room in Bethesda.
The testing they did for the Haifley family is what they do every day, all day, he said last week. Trying to find answers or clues for families who have sick children, or who have lost children for unknown reasons.
“Every day from all over the world, that’s what we do.”
When he was invited to speak to the council meeting of the National Institute of Child Health, it was an opportunity to explain the importance of that research.
“The No. 1 cause of infant mortality is birth defects, something that went wrong during development,” he said. "If you could emphasis to people how common these diseases are — if you add up all the people like Kendra’s family — it’s more than prematurity, it’s more than childhood cancer.”
And when he accepted the invitation to share that message in September — with the nation’s largest funder of medical research — he knew just who to ask to be the Voice of the Patient.
“She was without question, extraordinary. This was a medical institution in tears — there are many things I hope will continue to change because of that.”
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The mother’s words are powerful on the video from Bethesda.
They are hard to listen to. All the pain and hope layered between her descriptions of her children and their suffering.
Isabel was a lover of fashion and her babies and I knew she was going to be the most amazing mother someday. She was funny and ornery and always on the go ...
Sweet Silas arrived and loved cuddles, which were therapeutic and welcomed. He reminded us of his sweet sister at times. He was also silly and loved dragons and books. The days were filled with hope and it felt like we were healing ...
Kendra spoke of hospital stays and perplexed doctors. About becoming her sick children’s advocate and protector. About the isolation and the devastation of losing them.
She talked about the important research being done at Yale and the doctors who provided them answers — or as close to an answer as research results can offer. How other families deserve to have answers, too.
And how important it was for all families whose children suffer for unknown reasons — and for one family in Lincoln, Nebraska — to understand what caused their babies to become sick and die.