Amy Hamilton wasn’t with her newborn daughter Rachel in the five days after she was born. Instead, Amy was recovering in the ICU at Kingwood Hospital, and her baby had been Life Flighted to Memorial Hermann after a “one-in-a-billion” complication with the birth.
Both mother and child almost died, with Amy losing 40% of her blood and Rachel not breathing for the first 10 minutes of her life.
Amy Hamilton, who now oversees technology at Kingwood Park, had to rely on anecdotes and updates about her daughter from her husband and family who visited both hospitals.
One day during that time, she got an update that added to the stress.
“She has your eyes,” Amy Hamilton’s mother told her.
“What do you mean? Her eyes are bigger than mine.”
“No, she has your eyes.”
It was then that Amy Hamilton realized her daughter likely had Osteogenesis Imperfecta (OI), commonly called the brittle bone disease.
When diagnosing OI, discoloration in the sclerae (the white part of the eye) is a common sign of the condition. Amy was also born with the condition.
“If you look at our eyes, they’re not white,” Amy Hamilton said. “They’re like a grayish blue.”
OI is based on genetics, in which there is a 50/50 chance of passing it to offspring. For example, Rachel’s mom Amy has it, but Rachel’s older sister does not. Amy inherited it from her father.
Osteogenesis Imperfecta causes imperfect or insufficient collagen, a material essential for bone health, to be formed. As a result, afflicted people have extremely brittle and breakable bones. There are several types of OI, the mildest being Type 1, which is what the Hamiltons have, and the most severe being Type 2. In most cases of the latter, the child dies soon after birth.
Type 1 might be the mildest, but that doesn’t mean affected people don’t face their own challenges.
“I’ve broken 12 bones,” said Rachel Hamilton, now a freshman at Kingwood Park. “I’ve broken my elbow, my pinkie finger, some places in my ankles, some places in my wrist. I think I broke behind my kneecap once.”
It didn’t help that Rachel was, as her mother described, “an Energizer baby.” Rachel was always climbing and getting into things. It was especially difficult at school, where Amy couldn’t keep an eye on her. As a result, Rachel’s preschool teachers were very cautious around her — sometimes too cautious.
“I was telling the teachers, don’t worry about it,” Amy said. “If she breaks, just call me. We’re okay…You can’t keep up with her. Just let her go. She falls and she breaks. It’s okay. This is part of who she is.”
Rachel remembers breaking her arm in kindergarten when she fell off the monkey bars. Her classmates were initially appalled, but they soon got used to Rachel breaking bones.
“Everybody is low-key shocked at first; but like once it happens twice a year, nobody’s shocked anymore,” Rachel said. “It’s a normal thing to see me broken.”
When it came to sports, Rachel was limited in which ones she could pursue. She had to quit gymnastics because the extensive jumping required was giving her stress fractures in her feet as well as wrist pain. When it got to the point where she had to wear a brace, Rachel’s mother decided to make a change to more low-impact sports. She is currently on the golf team.
As for the possibility of the symptoms worsening or improving with age, Rachel’s seem to be stagnant. The last time Rachel broke a bone was Oct. 19, 2021.
“When I was younger, I broke a lot more bones; but that could be because I was younger then,” Rachel said. “Now, I’m a lot more careful with what I do. But I think it stays the same, because it’s in my bones. It’s not really changing.”
When one poor choice can lead to six months in a cast, Rachel has had to learn to make decisions while being conscious of her condition, even at the expense of things she’d like to do.
“I think it’s changed my outlook…I have to be really careful in doing stuff; and I have to make the right decisions, or I could end up hurt,” Rachel said. “I would also like to go adventure, and I really want to do fun stuff. [But] it’s not like I can always do it.”
