Deacon Anthony Bonacci (left) baptized Thea Frank on May 3, 2019 at Nationwide Children’s Hospital with mother Laura holding the baby and husband Phil at her side. 
                                                                                                                            Photo courtesy Frank family
Parents grateful as little girl thrives despite diagnosis

By Doug Bean
Catholic Times Editor

The gift of life comes in many sizes, shapes and forms. Phil and Laura Frank received a special delivery nearly two years ago with the birth of their first child – a bundle of indescribable joy who so far has beaten the odds.

Thea Margaret Frank was born on April 28, 2019 at Dublin Methodist Hospital. After the baby was delivered, Phil and Laura knew something was not normal, but they did not immediately understand the extent of their daughter’s condition. A few days later, Thea was transferred to Nationwide Children’s Hospital.

Medical specialists determined that Thea had a rare condition known as Trisomy 18, or Edwards syndrome. Most babies with Trisomy 18, which is caused by an error in cell division and results in an extra chromosome 18 that affects the developing child, die before birth or within a few hours after delivery.

On May 3, Laura’s father, Dennis Morrison, made an urgent call to his brother, Deacon Anthony Bonacci, summoning him to Nationwide Children’s to baptize the baby. “I well remember his tearful call, telling us that Thea was not expected to make it,” recalled the deacon, who serves at Plain City St. Joseph Church.

At 7:15 that evening, Thea received the sacrament administered in what Deacon Bonacci called a “very special Baptism ceremony there in the neonatal intensive-care unit.”

The newborn survived those first few hours with assistance from doctors and nurses. Hours then turned into days. Thea kept progressing and was able to go home with her parents after 30 days in the hospital. Days have now turned into weeks and months. 

According to the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT), one in 7,000 live births in the United States are randomly affected with the condition. Five to eight percent survive past one year without extraordinary measures, and that rate increases with medical intervention.

Thea Frank is now just two months away from her second birthday.

“Thea continues to amaze us and is a daily reminder of how sacred the gift of life is,” her father, Phil, said. “This is especially true since we left the hospital thinking we only had weeks to months to share with her.”

An extra chromosome causes both Trisomy 18 and Down syndrome, but Trisomy 18 presents more potentially life-threatening medical complications in the first months of life in addition to developmental delays.

Optional prenatal testing can detect the extra 18th chromosome and, sadly, U.S. statistics indicate that 75 percent of babies are terminated if a Trisomy 18 diagnosis is made before 24 weeks. But the Franks had no indication that anything was wrong. 

“It was a complete surprise,” Phil said. “Laura’s pregnancy was very normal. At the last OB appointment, the doctor actually said, ‘Well, this has been a boring, regular pregnancy.’” Even if the condition had been spotted, “there’s nothing you can do anyway,” Phil explained.

Labor and delivery weren’t complicated, and Thea’s birth weight was normal. A cleft lip and palate, often a sign of Trisomy 18, had gone unnoticed on ultrasound images because Thea’s hands were covering her face in the womb, but was evident after the delivery.  

“The cleft lip and palate definitely jumped out to me as a sign,” Phil said. “And then she had a couple small, little genetic defects that we picked up on.”

One of those was a sixth digit with no bone next to the pinky finger on both hands. 

Thea has undergone two surgeries so far, including one involving her spinal cord, and likely faces more surgical procedures.

She is afflicted with a host of medical complications that require frequent doctor visits. Her vision is limited, she received nutrition through a tube in her stomach, and her motor skills are delayed. But Thea can stand with her parents’ support and might be able to walk one day.

“The biggest thing we’re dealing with now is apnea spells, which didn’t really come until she was about a year old,” Phil said. “It’s not quite like sleep apnea. These happen during the day, and she’ll stop breathing. We have to try to stimulate her by rubbing on her sternum, giving her some pats on the back and trying to wake her up, (and using) deep suctioning down the nose.”

Phil and Laura write down everything that happens during the course of a day and have documented more than 100 similar episodes. Central apnea commonly occurs when the brain fails to send a message to breathe.

“Whatever we do always works, and she finally comes out of it,” Phil said. “She’s a little tired but bounces right back. Nobody knows what’s causing that.”

Every parent knows that night sleeping can be an issue with young children, but Thea does relatively well, her parents said. “She’s learning her environment a little bit more and knows when we’re not around, so in the middle of the night she wakes up, (and) she just wants to know that we’re there,” Phil said. 

The Franks must stay highly organized to track myriad doctor and therapy appointments, which have included up to 10 in one week. They try to schedule medical visits around Phil’s schedule. He’s an athletic trainer who works with students at Central Crossing High School.

“I’m very good at just making sure we’re journaling everything,” Laura said, “just to have a good record of being able to look back on things because we want to be able to remember all of it for appointments.”

Phil, who moved to Columbus from the Buffalo, New York, area to attend graduate school at Ohio State University, and Laura, a central Ohio native, were married in 2017 at Columbus Our Lady of Victory Church by Deacon Bonacci. Two years later, their lives were forever changed when Thea came along.

“I think we’re in a good rhythm now,” Laura said. “When we first came home, we came home with hospice care, which I’m really thankful for. We can have a nurse come out every day if we want to check her vitals, keep track of her. The support has been amazing.”

The couple’s parents have provided support as well. Phil’s parents come to visit and assist once a month from the Buffalo area. Morrison, Laura’s father and a Columbus attorney who attends Hilliard St. Brendan Church, wrote a heartfelt reflection on his granddaughter that is published in The Catholic Times.

Thea will soon be a palliative-care patient, which means less attention from medical personnel on a day-to-day basis than someone under hospice care. “She won’t be at the top of their worry list anymore,” Phil said.

“If we look to the statistics of those children who live past 1 year of age, we know there are cognitive development delays and impairments. Unfortunately, I do not have a medical intervention to right this,” said Dr. Lisa Humphrey, director of hospice and palliative medicine at Nationwide Children’s who has worked with the Franks since the early stages after Thea’s birth to align a health plan that meets the parents’ values, hopes, faith and goals. “However, I am a firm believer that a loving and stimulating home environment that provides the type of scaffolding to allow any child with developmental disabilities to optimize their potential is a must. Thea’s parents are models in providing this type of environment, and Thea is becoming her best self and it has been a joy to witness.”

Dr. Humphrey prefers not to talk about life-expectancy rates for children born with Trisomy 18 but focus instead of how the medical community and the family can work together to develop a beneficial health-care intervention. 

“Among the many reasons I love my job is because I believe in miracles, love to bear witness to them, and my job is bountiful in both regards,” she said. “I, like all people, have a hope for miracles such as the curing of a cancer. However, that is not always possible, as in a genetic disorder like Trisomy 18 at this time.

“I also know, though, that miracles come in all types and it is not necessarily up to me to define what equals a miracle. Rather, it is my job to look for them and honor their presence. A child who is not suffering because I find a medication to mitigate the pain is a miracle. Similarly, to witness Thea’s smile and its unabashed joy is a miracle.”

For Thea to have “lived as long as she has and as well as she has is a miracle for me to behold,” Dr. Humphrey continued. “Her parents’ capacity to have identified her life, however long or short it may be, as a miracle, and to have followed their hearts so closely, advocated so well, and also trusted and partnered so well with her medical team is the type of miracle I am honored to bear witness to and learn from.”  

In spite of the difficulties the Franks have faced, Phil and Laura feel blessed to have Thea in their lives. While they don’t know what the future holds, they are committed to providing their daughter the best life possible. Children with Trisomy 18 have lived into their 20s and 30s.

“Our advice to a couple in a similar situation would be to have hope, to never underestimate how strong these children can be, and, finally, to advocate for them so they can receive the care they need to thrive,” Phil said.