Five years ago, Carol and Alan Daines of Mapleton had never heard of spina bifida, a birth defect of the backbone often called "open spine."
Since then, the Daines have become experts on the subject: two of their four children have been born with spina bifida. Adam, born in 1984, was the Daines' third child, and their first to have spina bifida."If we would have taken a class on this birth defect and known it was a possibility, but we had never even heard of it; we didn't even know what it was," Carol said.
Not knowing what to expect - what to hope for, what they would have to face in the days, months and years ahead - was terrifying. Adam's spinal column had been damaged during his birth, causing paralysis from the waist down. The Daines were told Adam might be severely retarded, and that his chances of living weren't great.
Adam did live, although the problems and struggles he has had to overcome have been great. When Adam was 4, a sonogram revealed that the Daines' soon-to-be-born fourth child also had spina bifida. The Daines relived everything they had gone through in the meantime with Adam.
"But maybe a little worse, because (this time) we knew what could go on," Carol said.
In 1989, 1,500 babies in the United States (one in 2,000) will be born with spina bifida. The cause of the defect is not known.
For some, the birth defect will be so slight that the child will not even be affected. Others will experience paralysis, hydrocephalus, bladder and bowel problems, retardation, susceptibility to infections such as spinal meningitis, etc.
"Adam has had all the things that could happen to him happen," Carol said. From surgery four hours after birth to close his spine, to a bout with spinal meningitis several weeks later, to placement of five shunts inside his brain to drain excess fluid, the Daines have been through it all with Adam. More than once, they were prepared for him to die.
"For everything Adam has been through, he is a miracle," Carol said.
Tyler, who is 8 months old, has had different kinds of problems. Carol received a grant from the March of Dimes that provided for Tyler to be born by Caesarean section last April. Research has shown Caesarean births minimize paralysis in infants with spina bifida.
Tyler has full use of his limbs. But weeks after his birth, Tyler was found to have Arnold Chiari Malformation (common in spina bifida), in which the lower brain stem is compressed and which causes problem with such functions as swallowing, gagging and breathing. He was given a 5 percent chance of living.
"I kind of thought in the back of my mind `Well, Adam has made it five years, he made it . . . can we be blessed again to have another baby live,' " Carol said.
Although Tyler spent the first seven months of his life in hospitals undergoing surgeries and fighting off infections, he is now home and appears to be doing very well.
The biggest obstacle Tyler faces right now is being weaned from the tracheotomy that has helped him breathe thus far. The Daines believe Tyler's chances for a fairly normal life are high.
There are times when having two children with spina bifida seems overwhelming to the Daines. But, the Daines will tell you, they wouldn't trade their boys for any thing.
"The kind of kids they are - Adam is so loving," Alan said. "It's not easy but if you're around Adam, it's like I can't wait to come home from work."
"A lot of people say it's like being around an angel," Carol added.
"Alan and I kind of take it day by day," she said. "Our long-term goals for our boys are to give them the best medical care they can get and the best education and to do whatever we can to better their lives. In fact, it (our goal) is not any different for them as it is for our other kids - to give them everything we can give them."
The Daines say they get most of their support from the gospel and from knowing the plan of salvation.
They also have found that trying to educate people about spina bifida and lending their support to the March of Dimes has helped them, too.
Adam has been the ambassador for the March of Dimes Southern Region for three years. Carol started a branch of Parents Together - a support group for parents with children in the newborn intensive care unit - at Utah Valley Regional Medical Center.
"I think that one reason we have these boys is to help other people," Carol said. "I have a feeling I will always be involved with the March of Dimes, one way or another."