In the 1950s and 1960s, options for treating spina bifida were much different from today.
One local family experienced it all firsthand – not once, but twice.
Marlena Freiner of Herculaneum and her husband, the late Don Freiner, were both 23 years old when their third child, Gary, was born with spina bifida in 1958.
“I had never heard of it,” Marlena Freiner said. “He came out and his little legs just didn’t move. It was scary. Back then, they couldn’t tell you anything. There was no one who came to talk to me about what our options would be. There weren’t any options.”
Freiner said doctors at the St. Louis hospital advised her not to bring the baby home.
“He said, ‘I know you won’t consider putting him in a state home, but he probably won’t live three months.’ They kept him in the nursery there at the hospital from when he was born in September until February. He was separate from the other babies, in his own little place.
“I finally told them, ‘I’m going to take him home, and I’m going to keep him and take care of him until God says different.’”
Little Gary came home to the house where Freiner still lives today, and shared a room with his older siblings.
Freiner said the doctors told her and her husband their baby’s condition was simple chance, and that subsequent children wouldn’t be affected. But their daughter, Lisa, was born with the same condition in 1962.
Both children were paralyzed in their lower bodies and were wheelchair-bound; both required colostomy surgery by the time they were 8 years old. Lisa also needed surgery to correct a cleft palate and club foot, and both needed a number of medical procedures in their early years.
Caring for two active children, a severely handicapped toddler and a new baby with even more problems proved to be quite a challenge – and expense – for their parents.
“We brought Lisa home and tried caring for them both,” Freiner said. “I made it through the first night, but I just cried and cried.”
It was decided that the baby would go to live with her paternal grandparents in Affton.
“That was so hard, so hard,” Freiner said of the decision to have their daughter live apart from them. “I cried, and Don cried. It was the hardest thing I have ever done. We told her, ‘We’re not giving you away.’ But we did what we had to do; we had to make the decision that was best for her.”
Today, Lisa, 51, lives independently in Affton; Gary died in 2003, a few weeks shy of his 45th birthday.
Freiner said she would have liked to have the information and support that is available to parents now.
“We just didn’t know what to do back then,” she said. “It would have been great to have what they have now. Our lives would definitely have been very different.”
A story in the July 3 Leader tells the story of the Brischle family of Festus and baby Kaylee, who underwent surgery in the womb to begin treatment of spina bifida.