FLASHBACK FRIDAY – July 2, 2006
Making the most of every day: Family copies with newborn’s terminal diagnosis
Odessa American, Odessa, Texas
Article published July 2, 2006
By Elizabeth York
Birth is a time of celebration, new life and wonder. But one Odessa family is facing the terrible combination of having a newborn diagnosed with a terminal disease.
Odessans Casey Tucker and Pamela Sanchez welcomed their daughter, Harley Renee Tucker, on June 17 at Medical Center Hospital. Harley weighed a little more than 5 pounds even though she was full-term.
Hospital staff discovered that Harley was not a normal baby. She had close-set, bulging eyes and a cleft palate.
Harley has holoprosencephaly, a mid-line disorder in which the brain and head do not develop properly. The presence of the disorder came as a surprise to both parents.
“Every prenatal test that the doctor and Pam did came back normal,” Tucker said.
Tucker is 25 and has a 7-year-old son, Richard Bryant Tucker.
Sanchez, 27 who has another daughter, 8-year-old Mackenzie Marquez, said having a new baby was “like starting over.”
Sadly, doctors gave Harley a terminal diagnosis, Tucker said. That could mean she had days or years, he said. “We don’t know what to expect,” Tucker said.
The miracle baby, as Harley’s parents call her, is a Home Hospice patient.
Sanchez held Harley, dressed in a pink onesie, while sitting on her living room couch Monday. Harley’s soft brown hair was covered in a bow-topped head wrap, and she lightly sucked from a slender feeding tube.
Sanchez is a radiology technician at Medical Center Hospital, and Tucker is a construction worker. Now both parents are staying home with Harley.
“We didn’t want to leave her in the hospital,” Sanchez said. “We wanted to bring her home and spend as much time with her as we could.”
The family pediatrician, Dr. Violeta Bello, said anywhere between one in 5,000 and one in 16,000 children are born with holoprosencephaly. Many pregnancies involving babies who have Harley’s disorder end in miscarriage, Bello said.
The austerity of the disorder ranges from mild to severe, depending on the time in which the developing brain begins to form improperly. Most of the children are mentally retarded, Bello said.
Bello said that some children with severe cases of holoprosencephaly have high mortality rates, but she did not draw a conclusion about Harley’s case.
“We just take one day at a time,” Bello said. “They are wonderful people. They’re doing a great job with their baby.”
Harley’s parents are facing the likelihood that Harley’s condition is severe because she has a heart murmur and seizures, Sanchez said.
But the family isn’t giving up. They are in contact with specialists at The Carter Center for Brain Research in Holoprosencephaly and Related Malformations at the Texas Scottish Rite Hospital for Children in Dallas.
Tucker said the family is looking at traveling to Dallas to visit the center.
“We’re not sure how this is going to play out,” he said.
Odessan Share Davison, Tucker’s uncle, set up an account for contributions directed toward the family and is helping organize a golf tournament and a softball tournament. He is hoping to raise money to help Harley and her parents.
“Casey and his family are doing an excellent job,” Davison said. “It hasn’t been easy but they’re going a great job.”
Reprinted with permission of the Odessa American