Osteogenesis Imperfecta (OI) or brittle bone disease is an extremely rare genetic disorder that impairs the body’s ability to make strong bones. The disorder can be passed on by a parent or occur through a spontaneous mutation.
According to the American Academy of Orthopedic Surgeons, approximately 20,000 to 50,000 people in the United States have the condition. Unfortunately, sometimes when parents receive the news that their unborn child may have the disorder, they consider abortion. But when Angela and Chad Diven’s found out that their baby would have OI, abortion wasn’t an option.
Angela and Chad Diven recently gave birth to a baby with OI and it has completely changed their lives.
Baby Layton Diven has the face of an angel and the spirit of a fighter. At ten weeks old, he’s already overcome multiple bone fractures. “He’s probably had at least 20 with his ribs and his legs as far as bones go. That’s just the ones that you would know about,” said Angela.
Some of these fractures happened before he was born. Layton’s legs healed in a bow shape because of his position in Angela’s womb during the pregnancy.
“The doctors say they may straighten out some, but he’ll have to have surgery where they’ll go in and break his legs and put rods in his legs and stabilize his legs,” said Chad.
Doctors detected abnormalities in Layton’s growth at that point, but believed he suffered from dwarfism.
“There wasn’t a lot that they really knew about it. It’s not something you really come across that often. Some people in their whole health care field never see one. I don’t think my OB had ever delivered a baby with this and he’s done it for years,” said Angela.
Layton’s bones are so weak they can easily crack. To avoid injuring Layton, he typically gets held on a pillow. Angela has to dress him in loose clothing.
“We wear bigger clothing already, size one diapers since birth, because you can’t be tight on his legs,” said Angela.
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Angela and Chad received little information from local doctors, so she took matters into her own hands and found OI specialists at Children’s Hospital and Medical Center in Omaha, Nebraska. They offer supportive therapy for kids like Layton to help reduce the risk of broken bones and increase their quality of life
“Clinically he is a Type III moderate severe. That was diagnosed in Omaha by the genetic doctor there,” said Angela.
Doctors give Layton medications similar to that of osteoporosis patients that will strengthen his bones over time. Once Layton starts to pull up, they will place rods in his legs to strengthen them enough for some walking. This is a far cry from where the Divens started shortly after Layton’s birth, when Angela was told that Layton had no chance of walking.
“Shriners had told us that he would never walk. He would never crawl. Basically they told us that he would be wheelchair bound,” said Angela and Chad.
Now, the family believes Layton is the greatest blessing of their lives. Angela concluded, “God entrusted us with him and knows that we can take care of him. That’s how I’ve had to look at it now instead of the burden I thought it was going to be at first. Really it’s going to be a bigger blessing than I ever thought.”