Community rallies around baby born with fatal birth defect.
by Jessica Langdon
WESTPHALIA — The baby’s heart beat robustly.
The sonogram showed 10 tiny, perfect fingers and toes.
Megan Drumm didn’t know it yet, but it also revealed the baby to be a boy.
She planned to carry that news home to Westphalia in a sealed envelope; she would open it later with her husband Michael.
They would share the news with their families at Thanksgiving. Instead, that sonogram performed the day before Thanksgiving 2012 revealed news that launched the family on a life-changing — and heart-rending — journey.
The baby, who was developing normally in every other way, had a fatal birth defect called anencephaly, which is estimated to affect one in 4,859 babies in the United States.
So when their baby boy, Zeno Joseph Drumm, was born in late March, no amount of time with him was guaranteed.
As things turned out, his family was given 33 hours with him — 33 hours to hold him, memorize him, and shower him with a lifetime of love.
The Drumms never imagined this would be their story.
Everything about the pregnancy seemed normal until November.
Accompanied by her one-year-old daughter Addison, Megan had a sonogram on Nov. 21, followed by a routine doctor’s appointment in Overland Park.
Dr. Kathleen Stone, a family friend and Megan’s doctor, looked at the sonogram report and then at Megan.
“Megan,” she said, “the baby is really ill.”
“I was just shocked to hear those words,” said Megan, “because you never expect that you’re going to be ‘that’ person.”
Stone told her that the baby appeared to have anencephaly, a condition in which the cranial cavity doesn’t form over the end of a baby’s spine. The baby is born without parts of the brain and skull, making it impossible for the child to survive more than a short time — usually only a few minutes to a couple of hours — after birth.
Stone worked into the evening, accompanying Megan for a second sonogram to get a better idea of the baby’s situation.
She could tell by the baby’s eyes that he was anencephalic, said Megan.
“She was the first one to cry with me,” she said.
Addition to the family
The news that Megan was pregnant had come as a welcome surprise in the summer of 2012, a stressful time during which Addison was sick and a cousin had died, said Megan.
Megan and Michael, parishioners of St. Teresa Church in Westphalia, were elated that this baby and Addison would be close in age. They liked the idea of having a big family.
By the end of the first trimester, they had chosen names — Zeno, after Michael’s grandfather, for a boy.
Over the Thanksgiving break, they held onto hope that the initial reports were wrong — that the baby would be fine.
On Nov. 27, both Michael’s and Megan’s parents accompanied them to another sonogram to confirm the diagnosis.
“This doctor was talking to us about our options, and he encouraged, I felt like, for us to terminate the pregnancy because it would be easier and we could just get started right away on another family member,” said Megan.
The thought of an abortion had never occurred to the Drumms.
“We’d both already bonded with Zeno,” said Megan. “We’d already talked to him, made plans, picked out names.”
He was part of the family.
The principal of the school where Megan manages the cafeteria encouraged her to take time off until Christmas so she could let the news soak in and grieve.
Eventually, Stone, Megan and a counselor decided that Megan wouldn’t return to work until after Zeno was born — to allow time for doctor’s appointments, to meet with hospice, and to make funeral arrangements.
January and February passed slowly, but the beginning of Lent started a new clock ticking for the family.
“We had an appointment right around Ash Wednesday, and I told the doctor that I wasn’t comfortable picking a day for him to be born because I felt like I was picking the day that he was going to die,” recalled Megan.
Stone picked for her — March 29. Good Friday.
In a journal entry on Zeno’s Caring Bridge website, Megan wrote that more than any other year, she could empathize with what it must have been like for Mary to watch Jesus on Good Friday.
As Michael did when Megan was pregnant with Addison, he often laid his head on his wife’s growing tummy and talked to the baby.
And Megan held Addison close at bedtime.
“It was like I was rocking my two babies to sleep,” said Megan.
Zeno, a “rambunctious” baby in the womb, would kick at his sister.
As Zeno’s birth approached, nightmares troubled Megan.
In one, Stone delivered the baby and told Megan that his face wasn’t worthy for her to see — something Megan knew the doctor would never do.
But the dream made Megan think about all of the families — and medical professionals — who are faced with situations similar to theirs, and it impressed on her how precious these babies are.
Family, friends and even strangers from several states came together on March 9 for a 5K run/walk to celebrate Zeno’s life, support the family, and raise funds to help with expenses.
Michael thought maybe 30 people — mostly family — would show up, and was stunned to see many times that number.
Close to 300 people ordered T-shirts.
And a member of the pro-life running organization Life Runners ran the 5K in Zeno’s honor.
Many members of the community also attended a Mass for Zeno and joined the family for a breakfast afterward.
Parishioners at all four of the area parishes where Father Marianand Mendem is pastor offered their prayers.
“They are really communities of faith, and they come together in prayer — and support each other,” said Father Mendem, who is pastor of St. Teresa Church, as well as St. Francis Xavier Parish in Burlington, St. Patrick Parish in Emerald and St. Joseph Parish in Waverly.
Megan’s mother, Margie Highberger, believes the prayers from so many people — from inside their small community all the way to Minnesota, Texas, California, New York and in between — made many small miracles happen for Zeno and their family.
Determined to do everything in their power to hold and bond with Zeno as long as possible once he was born, the Drumms scheduled a C-section, which is easier on a baby with anencephaly.
They stayed in a hotel near Overland Park Regional Medical Center the night before the surgery and arrived at the hospital early on March 29.
Father Tom Wiederholt, a retired priest of the Diocese of Kansas City-St. Joseph, slipped on a hospital gown, prepping for the surgery.
He would baptize Zeno as quickly as he could.
Father Wiederholt is Megan’s great-uncle — and Highberger’s uncle.
Like everyone else, his first reaction was one of dismay when he learned of Zeno’s birth defect.
Having volunteered as a chaplain at Children’s Mercy Hospital in Kansas City, Mo., he had baptized babies in urgent situations before and worked with families through infant loss. But nothing prepared him for making the emotional journey with a member of his own family.
Throughout the pregnancy, the Drumms peppered him with questions, and he supported them throughout.
Father Wiederholt found Stone welcoming and thanked her for her acceptance of his presence in the operating room.
The doctor told him she was glad he was there for the family.
Baby Zeno entered the world at 9:34 a.m. — pink, chubby and sturdy.
“This baby is anencephalic,” the doctor confirmed to Megan and Michael.
Megan’s heart sank as the last shred of hope faded that the diagnosis had somehow been wrong.
“But, then again, I felt such a peacefulness, too. Because, in the end, we all want to get to heaven and here we were with a little angel of our own,” she said.
She laughed for the first time in what felt like forever.
“I just remember that first kiss. It was so special because it was, like, I have waited nine months for this,” she said.
Zeno’s broad chest and stout shoulders reminded her of a football player. His legs and arms were long.
“My dad said he had my hands,” said Michael, who was proud of the fight his son put up.
Megan loved the look of adoration on her husband’s face as he held Zeno.
She kept running her fingers through the soft, strawberry blond curl at the back of Zeno’s neck.
She knew many babies with anencephaly don’t hear, are blind, and won’t cry like most babies.
But Zeno kicked and screamed and registered the shock of the water when Father Wiederholt baptized him right after his birth.
“When the water hit his head, he cried,” said Megan. “I thought that was so cool.”
So did Father Wiederholt.
“The baby was beautiful, oh my goodness,” he said.
“He would grab your hand,” he said. “He had a real grasp.”
Zeno’s health was so good the neonatal intensive care unit nurses returned to their floor, and the Drumms invited their families in.
“He was never once laid down in the bassinet,” said Megan. “He was always in someone’s arms.”
Too shy to touch him at first, Addison still wanted to be near and snuggled in close.
A photographer from While I Lay Me Down to Sleep, an organization that provides remembrance photography for families experiencing the loss of infants, discreetly captured images of Zeno’s first moments.
Megan held Zeno skin-to-skin, a connection that perked him up when he got cold and his color started to fade.
“It’s been a hard journey. It’s been a sad journey. It’s been a depressing journey. It’s been an educational journey,” said Megan. “But it’s been so worth it.”
At 9:34 p.m., the family celebrated Zeno’s half-day birthday and also said their goodbyes, uncertain whether he would make it through the night.
“His stats were dropping. We said a prayer, and we waited and we waited and we waited,” said Megan.
His breathing and heart rate stabilized.
The four members of the Drumm family slept in the same room that night, with Zeno on his mother’s chest.
Megan woke up at 2 a.m. and again at 4 a.m., both times finding him still looking wonderful.
“The next morning at 9:34, we celebrated his one-day birthday, sang “Happy Birthday” to him, and bought him a balloon and a big doughnut — of course, I ate the doughnut,” said Megan. “It was so wonderful that he made it to a day old.”
They were even able to feed him from a bottle, which they hadn’t expected.
Why not you?
About noon on March 30, Zeno had his first seizure.
In the course of his fourth, he died in his mother’s arms.
“I knew the exact instant that he was gone,” said Megan.
“Michael was right there beside me, helping me, and I was holding him, talking to him, telling him everything was going to be OK.”
When Michael left the room to tell their families, grief set in.
In a private hospital room, an exhausted Megan and Michael held onto their little boy for a while longer, not yet ready to place him in the bassinet.
When they left the hospital, they were immersed in preparations for Zeno’s funeral.
“Our family was such a safety net for us,” said Megan.
They couldn’t believe the show of support at the rosary for Zeno the night before the funeral.
“It was just astounding the amount of people that came, because they didn’t know him at all . . . but they still loved him,” said Megan.
Father Wiederholt celebrated the funeral Mass. In his homily, he reflected on some of his own feelings.
He talked about another father whose infant had died, and that father asked, “Why me?”
His best friend responded, “Why not you?”
Father Wiederholt’s homily resonated with the family.
“God never promised us a life that would be perfect, that we would always be happy and fruitful in things that we want,” said Megan. “But God always promised us that he would be with us. . . . His homily really hit home that day.”
Megan’s sister, Mindy Highberger, shared Zeno’s life story with the congregation.
“The proudest moment of the whole day was watching Michael carry his little casket out,” said Megan. “It would have to take a strong father to do that.”
Church is one of the places Megan now feels closest to Zeno.
Margie Highberger, likewise, found her brief time with Zeno to be a deeply spiritual experience.
“The morning after the funeral, this grandma woke up at 2 a.m. [and] realized what her family had witnessed in the past 20 or so weeks,” she said. “I was exhausted. . . . I couldn’t lift a finger or an arm.
“But, at that moment, something struck me.
“That when we touched little Baby Zeno’s face, we touched the face of God.”