Bringing Their Baby Girl Home
For Lasonya and her family bringing their baby girl Latreya home was the best decision to make after the doctors left them with only two options.
Lasonya Mott was five months pregnant when she found out her baby girl had a heart abnormality. The ultrasound technician hovered over the baby’s heart and then called in the doctor, who told her the devastating news.
The heart condition was terminal. “Everything stopped in that moment,” recalled Lasonya, who is a nurse and a minister. She went home and prayed.
Latreya Renee Mott was born on April 7, 2021, and spent her first 33 days in the hospital. Lasonya’s 14-year-old son, Malcolm, had been praying for years for a baby sister. He finally got his wish, but because of COVID visiting restrictions, he could not visit his sister in the hospital.
Doctors gave Lasonya and her husband two options: surgeons could try to repair Latreya’s heart, which would require three surgeries and months in the hospital with little chance of prolonging her life. If she died in the hospital, Malcolm would never be able to hold his baby sister. Or, they could take Latreya home and spend their remaining time together as a family.
“When a social worker came in and presented the idea of Gilchrist Kids, I had the answer,” said Lasonya. In May, she took Latreya home.
Gilchrist Kids provided everything they needed to care for their daughter at home. A Gilchrist physician visited their home to assess Latreya, and a hospice nurse came at least once a week. A social worker offered emotional support for the family, and a chaplain visited and prayed over Latreya. A Gilchrist volunteer even visited to take photographs for them.
The nurse, Kristi Choyce, helped secure all the supplies for Latreya’s complex medical needs, such as oxygen, feeding tubes and medication. She answered the family’s questions and coordinated with the Gilchrist Kids doctors and other specialists on Latreya’s care team, including her pediatrician, cardiologist and gastroenterologist.
For families like Latreya’s, having one person communicate with all the specialists on their behalf allows parents to focus on spending precious time with their child rather than coordinating medical care. It also allows them to avoid doctors’ visits because they receive all of their care at home.
“The most important thing was helping me to navigate [this situation],” recalled Lasonya. “They gave me a sense of hope when normally people have such a fear of death.”
When Lasonya went back to work, Kristi made nursing visits to Latreya at her daycare. Gilchrist Kids teams will care for children wherever they go, whether at home, daycare, school or the hospital.
The family could call the nurse helpline any time, day or night. During a particularly chaotic night—when Latreya pulled out her feeding tube and Lasonya had to be hospitalized for a medical crisis of her own, Gilchrist was immediately available. With one quick phone call, Kristi was over at the house to help Lasonya’s husband with feeding and medication.
“Kristi was a lifesaver for Latreya and for me that day,” said Lasonya. “In situations when we didn’t have anyone else, Gilchrist stepped up to the plate.”
Kristi, along with the Gilchrist Kids physician, Dr. Bridget Pekrul, helped Lasonya advocate for her care wishes. One of those was weaning Latreya off the feeding tube to bottle feeding. It allowed her to be close, free from tubing and tape, and comfortable. Lasonya needed people in her corner to make her goals and wishes known, and that’s what the Gilchrist Kids team did.
For the two months Latreya was home, she brought joy to her family and everyone who met her. Big brother Malcolm spent every free moment bonding with his baby sister.
On July 24, Latreya passed away peacefully. Lasonya held her precious baby girl until the hospice nurse arrived.
Lasonya feels blessed for the time she spent with her daughter and is grateful that Gilchrist was there to help her through. Her deep faith has allowed her to cope and find purpose in her loss. She plans to draw on her experience to minister to others who have lost a child.
“I want others to know there is life after death for the living,” she said. “Just keep going and try to find purpose for your loved one. There is hope.”
Gilchrist Kids provides care and support for dozens of terminally ill children and their families each year. To learn more, visit gilchristcares.org/gilchrist-kids.
To support our work, visit gilchristcares.org/give.