Tenth in the “Gift of Life” series is the story of my cousin's daughter who shares hope and inspiration to many through her journey with a frightening diagnosis.
In May of 2021, Debbie Allen and her husband, Casey, felt like they were on top of the world. They had just closed on their dream house in the Santa Cruz Mountains in California, and after months of trying and almost giving up, they found out Debbie was pregnant with their third child.
Their daughter, Ash, who was eleven, and their son Jack, who was eight, settled into their new school, and Debbie found a job she loved as a 9-1-1- Dispatcher. They were all thrilled to be welcoming a baby into the family.
Debbie’s pregnancy was going well. She found a doctor and began her pre-natal appointments. Everything went smoothly until, at twelve weeks, she had her NIPT test, a routine blood test that detects chromosomal conditions. The test came back as “inconclusive,” so it was repeated at fifteen weeks. This time the test results showed a 46% chance that her baby had Trisomy 13, a rare chromosomal condition caused by an extra 13th chromosome.
Debbie and her husband scoured the internet for information about Trisomy 13. What they found was alarming. Most Trisomy 13 babies miscarry before birth, and those who make it to birth rarely live to see their first birthday. “I didn’t find anything to give me hope,” Debbie said in a phone interview. “It was all doom and gloom. Most people with the diagnosis choose to terminate the pregnancy for medical reasons.”
The next week Debbie was given an early anatomy scan. “While they were doing the ultrasound and started pointing out abnormalities, I knew it wasn’t good news,” she said. Based on those results, they performed an amniocentesis. After two long weeks of trepidation, their baby’s diagnosis of Trisomy 13 was confirmed. They met with the doctor, and she said that she had never had a patient with a Trisomy 13 diagnosis continue the pregnancy and give birth to their child.
“We were devastated,” Debbie said, “It was scary enough choosing to bring another child into the family, and now this? How could this be happening? This is not what we were expecting!”
Soon Debbie and Casey had a consultation with the NICU (Neonatal Intensive Care Unit) doctor.
He brought in a testimonial from another parent saying how hard it was to give birth to a Trisomy 13 baby and explained all the possible scenarios. He strongly recommended they terminate the pregnancy. “We went home from that appointment absolutely crushed. We cried and cried and cried. We felt like all hope was gone, and we felt so alone.”
So, Debbie went searching for hope. She connected to several support groups online which had a different perspective. Without sugarcoating the reality of giving birth to a baby with Trisomy 13, they offered hope. “You can do this, and we are here to help you,” was their philosophy.
One of their online groups offered Debbie and her husband both group and individual counseling, a service that helped them tremendously.
Debbie connected to a woman who lived near her who had a nine-year-old with Trisomy 13. She spoke with Debbie for an hour and a half one evening. Debbie was encouraged to know that there are people with her diagnosis who choose not to terminate their pregnancy.
This was a turning point for Debbie and Casey.
They thought of the Bible verse in Psalm 139:14 “For you formed my inward parts; you knitted me together in my mother's womb” and knew that their baby was precious in God’s eyes just as he was.
They placed their child in God’s hands and felt at peace with whatever happened. They knew it was likely that Debbie would miscarry, or if their son was born, that he wouldn’t live long, but from that point on, Debbie and Casey were determined to live in the present moment.
“We stopped worrying about what tomorrow would bring and focused on every moment,” Debbie said, “We were thankful for each day and tried to make precious memories while we could.”
Debbie took her family on outings to the beach, and, on Debbie’s 39th birthday, to Disneyland. “We knew the odds were that our son would not live long enough to visit Disneyland, so we planned a trip while I was pregnant. The four of us had a wonderful time and created cherished memories. We documented it with pictures of the family, including my baby bump,” Debbie said.
In what seemed like a cruel and insensitive decision, Casey was let go from his job when he informed them that he was not able to work more than forty hours a week and would need time off for doctor’s appointments. At first, the news felt shattering, but they soon realized that it was a blessing. “It ended up giving Casey the freedom he needed to focus on the family and reevaluate his priorities in life,” Debbie explained. The family lived off their retirement savings as they worked together to meet their many needs.
Debbie did extensive research to prepare for any possible scenario. They did not want to be taken off guard and forced to make a quick decision. For instance, Trisomy 13 babies often have respiratory problems. If that happened, he would be given oxygen. If that didn’t work, he would be put on a CPAP machine, and in extreme cases, a tracheostomy would be performed. By researching ahead of time, they knew they were willing to do everything possible to help his breathing, even if it meant having a child with a tracheostomy and a ventilator.
Few hospitals are equipped to offer the extensive medical services most Trisomy 13 babies need. The hospital where Debbie began her pre-natal care did not, but Stanford Hospital, which was 47 miles from Debbie, did. The problem was that her insurance wasn’t accepted by the hospital in
Stanford. It was a long process, but Debbie changed her insurance. It was finally approved when she was 37 weeks pregnant. “I spent the next two weeks repeating medical tests that were requested by Stanford Hospital. It was like a whirlwind—we had multiple phone calls every day with medical staff, social workers, and bereavement counselors.”
Finally, at thirty-nine weeks, Debbie was induced. She felt so blessed that she had made it this far. After forty-six hours of labor, in a room filled with specialists, her precious baby Theo was born on January 25, 2022. They briefly laid him on her chest while they cut his cord and then whisked him away to a NICU bed in the corner of the room. Debbie couldn’t see him because of all the medical staff. She turned to her nurse and said, “Is he breathing?” The nurse tried to peak through the crowd and then turned back to her and said, “I can’t tell.” Despite the uncertainty, Debbie and Casey felt at peace.
Theo was brought to the NICU, placed in a warming bed, and hooked up to a CPAP machine. Casey followed close behind. Later, when her doctor approved, Debbie came down and was overcome with joy to meet her son. “He was alive, and he had made it this far. He was just lying there sleeping, like any other baby.”
A few days later, when Debbie was released from the hospital, she was offered a closet-sized room off the NICU with a small bed and chair which she and Casey used alternately while they juggled their schedules between the hospital and home to care for their other two children.
During this time, Debbie’s friend gave her the book, Seeing Beautiful Again by Lysa Terkuerst which gave her much hope and encouragement while she was at the NICU.
Their room in the NICU was theirs for four months while Theo went through several surgeries and many medical procedures. He was transferred to the PICU (Pediatric Intensive Care Unit) when he grew too big for the NICU. “We spent a painfully long month and a half in the PICU,” Debbie said. “We no longer had a sleeping room, so we were both driving back and forth every day. It was a three-hour round-trip.”
The goal while Theo was in the PICU was to prepare him to go home. He had a tracheostomy, and the family had to be trained on how to do his trach care. He also was not allowed to go home until the family had lined up a home health care nurse. They weren’t feeling optimistic about finding one that would drive up to their small mountain community, but God intervened. A nurse moved into the neighborhood who lived a short walk away and had experience with pediatric trach care. She became Theo’s nurse and a good friend of the family.
A month and a half after being moved to PICU, on July 12, 2022, when Theo was five and a half months, he was paraded past well-wishing medical staff lining the halls of the hospital and put in a medical transport to take him home.
Theo’s equipment took up almost an entire room, but the family had such joy and peace to finally have him home. The timing was perfect since the older kids were out of school for summer break. “Having Theo home was so wonderful. Theo was such a happy baby. He had a gentle temperament and seemed so happy to be alive,” Debbie said. “We had worked so hard, and finally, we had the whole family together.”
Debbie and Casey were so pleased with how the older children embraced their little brother and became a part of his care team. Ash loved to snuggle with her new little brother, and Jack enjoyed watching movies with him. They took turns watching him and notified their parents when he needed attention.
Debbie explained that as wonderful as it was, it was difficult. Theo needed 24-hour care. Their nurse worked the night shift, forty hours a week, but a family member had to be by his side the rest of the time.
For the first two weeks, Theo needed to stay in the house. Much family bonding went on during this time. After two weeks, the family was able to take Theo on walks in his stroller, and eventually, he was cleared to go on car rides. He needed lots of equipment with him, but that didn’t discourage Debbie.
Being able to take him out in a car opened a door for many firsts—the first time they took a family walk along the beach, the first time they took him out to dinner with the family which was at a fun outdoor burger joint, and his first in-person doctor’s appointment.
Now that Theo was home, they began to think long-term. Debbie contacted local authorities and made plans for an airlift in case he had an emergency since it was an hour-and-a-half drive on windy roads to the hospital. Casey applied for a program that would allow him to be paid to be Theo’s caregiver, and Debbie prepared to return to work.
During this time, they took Theo out for doctor’s appointments at the rate of about two per week. He seemed to be thriving and had his cardiac appointment scheduled for the following week. The family was taken off guard when his little heart couldn’t take it anymore, and he passed away at the age of seven months on September 3, 2022, from an unrepaired cardiac defect, a condition the doctors were following and were hoping to repair by surgery.
The grief over losing Theo was intense, but Debbie and Casey are at peace that they did everything possible for their son. “The easy thing would have been to terminate him when we first heard his diagnosis. But the easy road is not what is necessarily going to bring you peace.
“We know we made the right decision to bring him into this world. Not once did he appear to ‘suffer’ from the trisomy diagnosis like medical professionals predicted. We went through something really hard, but it has made us all better people.”
Debbie and Casey are overwhelmed when they think of all the ways God provided for them through this journey. First, the fact that they had moved to their current house put them less than fifty miles away from a hospital that was able to treat Theo. And how God provided a nurse in their small mountain neighborhood, not to mention all the support from the medical staff, the online support groups, her parents, and the community. “We were showered with gifts and help from people we barely knew,” Debbie said, “past classmates, co-workers, and distant relatives I had never met.”
“So many positive things came out of this,” Debbie said, “I don’t like to say out of his death, but out of his life, even though it was so short. We all grew so much.
“The biggest takeaway I can share with someone in a similar situation is to let God be in control and not try to control everything on your own. We felt a tremendous peace when we simply surrendered our son to God.”
More about Debbie: God blessed Debbie and her family with a new addition, Grant, in February. The family loves living in the Santa Cruz Mountains and taking excursions to the coast, about a half-hour drive away. They love to take sightseeing trips to all the great places California has to offer. Debbie encourages other Trisomy 13 parents through online support groups and spreads awareness of the diagnosis every chance she gets.
Links to Support Groups: If you or a loved one are faced with a Trisomy 13 or another frightening diagnosis, please share these links: