Meet 'Matthew the Great': The Iowa baby who defied a terminal diagnosis and lived

Daniel P. Finney | The Des Moines Register

Show Caption Hide Caption 'Matthew the Great' defies terminal diagnosis Baby Matthew was diagnosed with a brain deformity in utero and wasn't given great odds of survival. Moments after his birth, his doctors were proven wrong.

Drew Corpstein placed his newborn son on wife, Ariann's, chest.

Ariann was exhausted after nearly three days of labor.

"Is he still breathing?" Ariann remembers asking her husband.

Drew raised the boy's arm. It flopped down.

"I think he's gone," Drew remembers telling his wife.

The Ankeny couple arrived at Mercy Medical Center on July 27, expecting to measure their child's life in minutes and hours, not days and years.

Tests showed the boy's brain was malformed; he was not expected to survive long outside the womb.

But the against-all-odds story of the boy his parents would come to call "Matthew the Great" was only just beginning.

Early miscarriage

Ariann and Drew met while studying at Wartburg College in 2008. He was a junior; she a sophomore. One of Drew's brothers introduced them. They quickly became a couple and married in 2013.

They began married life with separate careers. Ariann taught English at Ankeny High School. Drew opened his own clinic, Embrace Life Chiropractic in Ankeny.

Ariann eventually left teaching to run the clinic's business operations.

"She's actually my boss," Drew said.

The Corpsteins decided to have a child, but lost their first baby to miscarriage in 2016.

The couple waited to try again, when the grief and other life stresses had diminished. They got good news in December: Ariann was pregnant.

Horrifying diagnosis

The Corpsteins decided to use a midwife to guide them through the birth process.

The first sign something was amiss came with early blood tests. The unborn baby's iron levels were low. Ariann had been anemic in the past, but she'd since donated blood; blood centers don't take blood from anemic donors because of the risk to both the donor and the recipient.

So, Ariann thought she was all right.

Her caregivers prescribed a different set of prenatal vitamins that would help her body better absorb needed nutrients.

The couple received a diagnostic ultrasound at 23 weeks. The radiologist noticed something wrong.

The Corpsteins' midwife called with the terrible news. The tests appeared to show their unborn baby had malformed brain tissue.

The couple took the call as they drove to a chiropractic conference. They pulled off to the side of the road and wept.

"We just held each other for about an hour," Drew said. "It was one of the worst days of our lives."

'In God's hands'

When the Corpsteins got home, they sought out a perinatologist, a doctor who specializes in high-risk pregnancies.

Imaging tests strongly indicated the couple's unborn child had formed a brainstem, which controls the body's autonomic functions such as breathing and a heartbeat, but not a full brain.

The couple sought a second opinion from another specialist. That diagnosis said the baby's brain had formed more than a brainstem but had not divided into two halves. The expected results were the same: Their baby was not likely to survive long after birth.

"The best prognosis we had was the baby would only live a few days," said Dr. Jona Conklin, who worked on the Corpsteins' case.

Doctors presented the Corpsteins with options. One was abortion. Another was to induce labor early to terminate the pregnancy.

The Corpsteins are devout Christians. They believed they should carry the child to term and have a vaginal delivery.

Ending the pregnancy early "didn't feel like it was my decision to make," Ariann said. "We knew that our baby was probably not going to be born alive. Whatever happens, it's in God's hands."

'As long as it's healthy'

The Corpsteins shared the bad news only with close family and friends. They eschewed the pregnancy rituals such as showers and assembling nursery furniture.

Patients who came into the clinic greeted Ariann with questions about the baby, often asking if she knew whether they were having a boy or a girl.

They were waiting to find out, she said.

"Well, as long as it's healthy, right?" came the usual response.

The first time Ariann heard that comment, she went to the restroom to cry.

Ariann's mother comforted her.

"She told me that even if it isn't healthy, we're still going to love the baby, no matter what," Ariann said.

Celebrating life, however brief

Drew and Ariann celebrated the final weeks of the pregnancy.

Drew rides a motorcycle. The couple had their picture taken on the bike and captioned it "Baby's first motorcycle ride."

They took a trip to Costa Rica in June — Baby's first vacation.

They allowed a few small showers among close friends and family.

Still, the sadness hovered.

While in Costa Rica, Drew put his hands on Ariann's belly. He felt the baby kicking.

The doctors told the couple the baby would behave normally in the womb: kicks, movement and hiccups.

The baby "was kicking like crazy," Drew said.

The irony nearly crushed Drew. The child was so alive inside its mother's womb, but all indications were the baby wouldn't survive long after birth.

Difficult labor

By the 37th week, doctors told the couple they needed to induce labor out of concern for Ariann's health. Ariann opted against a Cesarean section. But the baby's head was larger than normal. If she wanted to have a vaginal birth, now was the time.

The couple arrived at Mercy Medical Center's neonatal hospice unit, a special service for families who may face the birth and death of their child at the same time.

Ariann endured three days of labor. Finally, on July 29, the baby arrived. Drew delivered the child.

"It's a boy," he announced.

The umbilical cord wrapped around the child's neck three times, Drew said.

There was no crying. Drew heard just a slight puff of air.

Drew thought his son, whom the couple named Matthew, was already gone.

Chance for a normal life

Drew placed newborn Matthew on his mother's chest.

Matthew suddenly discharged a mass of fluid. He started to breathe more easily.

On instinct, Ariann tried to feed her son.

Then something unexpected happened. The child quickly took his mother's nipple.

"The nurses rated him a 10 out of 10 on that," Ariann said. "They told us normal newborns don't do that well."

Matthew kept exceeding expectations. His heartbeat was slow, about a third of what is normal for a newborn. But he kept breathing.

Matthew was born on a Sunday. The hospice team consulted with doctors in the neonatal intensive care unit. Matthew's continued success prompted them to order an MRI test on Monday.

The couple were initially reluctant.

"It was going to take a half-hour, and we knew our time with Matthew was limited," Drew said. "That was a half-hour we weren't going to have to hold him and be with him."

Jan Fick, a Mercy nurse with 36 years of experience, helped convince the Corpsteins to have the test.

"I told them I've been a part of 3,500 deliveries and changed 800,000 diapers," Fick said. "I won their trust."

The Corpsteins relented. After Matthew returned, a neonatal neurosurgeon visited the couple.

Their boy had been misdiagnosed.

Matthew's brain had fully formed, but it was pushed to the side of his cranial cavity by a massive buildup of fluid. Instead, a duct in the boy's brain had formed too small, the doctor told them.

This caused his skull to fill with fluid and push Matthew's brain to the side. The early tests were wrong.

Imaging tests on babies inside the womb can be tricky because all the tissue from the mother's body is in the way, said Conklin, the perinatologist.

"When you're using imaging technology, like an MRI, on a baby that's inside the mom's uterus, you're looking at something that's very small and very far away," Conklin said. "If you're trying to look at a heart defect, for example, you're looking for something that's about the size of a quarter or half-dollar through all the tissue that's a part of the mom's body and the fetus' body."

How the baby is positioned in the womb can also effect imaging accuracy and results, Conklin said.

The neurosurgeon said the fluid problem could be fixed by inserting a shunt in the duct to drain the fluid.

"He said he performed 30 of these surgeries a year and that he believed Matthew's brain would return to its normal position," Ariann said. "He said Matthew had every chance at a normal life."

'Matthew the Great'

The couple were astounded.

They were planning to say goodbye. Now, they were coming to come to grips with this wonderful, beautiful reality that they were going to take their baby home.

Ariann and Drew began spreading the joyous news: Matthew was going to live! Friends and family were rapturous. No one could believe it.

The surgery was a success. Matthew went home with Ariann and Drew on Aug. 4.

Two weeks after he was born, the only apparent difference between Matthew and other newborns was a dollop of goop Ariann needed to swab on Matthew's head where the surgical incision was.

"It's so amazing that a few days ago, he had brain surgery and he's just here in our house like nothing happened," Ariann said.

Matthew's story is a "very rare case," Conklin said.

"This is a great story, because it flipped the script, and the baby is doing much better than we thought," the doctor said. "But most of the time, these diagnoses are right, and that's why there is care like neonatal hospice."

The neonatal hospice prepares for all eventualities, including the possibility, however remote, that a baby will survive a terminal diagnosis.

Fick, the neonatal nurse, said a doctor from the neonatal intensive care unit and a social worker are assigned to the team to help couples who hadn't prepared for having a baby in their home to get cribs, clothes and other necessities.

The Corpsteins must still monitor Matthew very closely for neurological issues that could lead to long-term difficulties with mobility or cognitive ability. If Matthew gets a fever for any reason, they must take him to the doctor to make sure there's not a problem with the shunt, rather than just a bug.

"The baby still has a long road ahead," Conklin said. "There is a whole gamut of possible neurological impacts, including autism, learning disabilities and other pretty severe neurological disorders."

Matthew returned to the neonatal intensive care unit Aug. 19, where he'll be for up to three weeks. He developed meningitis, an inflammation of the brain, and his shunt had to be removed. Matthew's shunt will need to be replaced before he can go home again, Drew said. On Sunday, Drew said that Matthew was improving.

Still, monitoring their baby closely is what the Corpsteins always wanted, even if they did not expect such high-stakes stresses. They've already spent more time with Matthew than they ever thought possible. They plan to relish every second — something that pretty much defines being a parent.

They started calling the baby "Matthew the Great." He's the boy who beat death before he'd been born.

Ariann said, "If you don't believe in miracles, God sent us Matthew to remind us they're real."

How to help

Ariann and Drew Corpstein have established a donation page to help with baby Matthew's medical bills. Visit https://www.gofundme.com/miracle-matthew for more information.

Columnist Daniel P. Finney grew up in Winterset and east Des Moines. Reach him at dafinney@dmreg.com or 515-284-8144.