“It’s genetic.”
That’s what Brittany Smith
was told when she found out
her newborn baby girl,
Krisslynn, was breakable.
While most parents pass on their eye or hair color, Brittany handed down a disease that could take her child’s life with one wrong move. Almost every first-time mom is afraid of making a mistake, but imagine being told that cuddling, changing a diaper or picking up a newborn the wrong way could cripple her?
Or worse. It could kill her.
“During delivery, I heard my doctor say, ‘I heard a pop in her hip,’ and at that point my brain went, ‘My hips pop all the time, you know. I’m sure everybody’s hips kind of pop.’ I heard my baby cry, and then they took her to do whatever they had to do, while I went into recovery for like 20-30 minutes after my section.”
Brittany had to schedule a C-section because her daughter, Krisslynn, was breech.
When the new mom returned to her room, her baby still wasn’t back, but Krisslynn’s distraught father was there, frantically pacing the floor.
“When I go back in the room, Krisslynn is not there, and Dusty is freaking out, saying my baby’s leg is purple. Then I remember hearing the doctor say they heard a pop, so that’s when I realized my baby’s leg might be broken.”
Osteogenesis Imperfecta (OI) is a group of rare genetic disorders that make the bones brittle and prone to fractures, often with minimal or no trauma. Imperfect is literally in the disease’s name.
Brittany’s perfect daughter was immediately diagnosed with brittle bone disease and needed to be transferred to Women and Children’s Hospital right away.
Doctors X-rayed Krisslynn and found out that, aside from her femur breaking during delivery, she had ribs fractured on both sides that were already healing, which means those breaks happened before her birth.
“My first thought was, ‘Why me? Why my baby?’ I wanted kids for so long,” Brittany said. “My mama used to watch me cry because all my friends had all these kids, and that’s all I wanted, and it wasn’t happening for me. I thought, ‘You made me wait this long, and you’re telling me that my kid breaks? How am I going to take care of her?’
Brittany started Googling answers faster than doctors could give them to her; neither told her anything she wanted to hear. Both told her the condition could be fatal.
“Some stuff I read said that something as simple as holding her could break her,” Brittany explained. “So, you mean to tell me I can’t cuddle my baby? I might hurt her just by holding her?”
Knowing one wrong move could be life altering or life ending, Brittany didn’t budge when she was handed her daughter to hold for the first time. She held both her baby and her breath.
“I didn’t want to move and hurt her,” Brittany remembered. “They had her wrapped up really good, you know, to like hold her still and stuff, but I was so scared. I just held her and gently kissed her forehead, and that’s it.”
After some testing, doctors were eventually able to confirm that Krisslynn has a rare type of brittle bone disease — there were only 40 other cases in the world at the time of her birth.
“The doctor looked at me and said, ‘We don’t know. We’re going to have to learn as she grows,’” Brittany said.
The learning curve was going to be a difficult one, so to make life a little easier, Brittany stayed at her nanny’s house in Lafayette for the next two weeks. She wanted to be minutes away from the hospital in case she was a bad parent.
“We kept her on a pillow, and we would just carry the pillow around because we were scared. We just didn’t know how to hold her, how to handle her yet, so I had her on a pillow and we just loved her that way for a while,” Brittany said.
Her kid came with a whole set of “handle with care” instructions that would overwhelm any first-time mother.
“Never pick her up under her arms. Never, at any age,” Brittany said. “Never lift her leg to change her diaper. I would literally get poo on my hands so many times because I would have to pick her butt up, not her legs, to clean her.”
Fear of hurting her own child got the best of her, until something else took over entirely - complete and total exhaustion.
“There was one night she was really fussy, and I couldn’t get her to calm down,” Brittany said. “I finally just put her in bed with me and snuggled her, and since that day, I’m like, you know what, we’re just going to snuggle softly, but I’m holding my baby. She has pretty much slept with me every night since then. I don’t let her go, and she’s been fine.”
Better than fine.
Krisslynn had to wear a helmet for the first year of her life, but as soon as it was taken off, she taught herself how to scoot on her behind.
For Krisslynn, the movement meant independence; for Brittany, it meant her kid could play with other kids, even though she came with her very own warning label.
“When she started scooting, her in-home babysitter told all the kids to be careful with her, because she was her breakable baby,” Brittany said, “and that’s what all the kids knew her as, the breakable baby. But Krisslynn didn’t know she was because I never told her. She was just scooting around, playing with all the kids. She seemed no different. Scooting was normal for her and she was fast. Oh my god, the girl was fast.”
While watching her daughter slide around a room on her butt, she saw the grit in her. Instead of trying to slow her down out of fear, she chose to let her little girl find her own way.
“I was told she may never walk,” Brittany noted.
But after scooting on her butt for the first 2.5 years of her life, Krisslynn decided one day that she had enough of that.
“I was potty training her and she was on her potty in front of me. We were facing each other, and she suddenly stood up and took three steps to get to me. Then after that, she kind of giggled. I was so excited about it, so I put her back on the potty, and she kept doing it.”
She’s been walking - in her own way - ever since.
Did Brittany have a fear of her falling and breaking something?
“Of course.”
Krisslynn fell out of the bed once, and Brittany rushed her to the hospital thinking, “This is it. I just broke my kid and it’s all my fault.”
She didn’t break her though, and it wasn’t her fault; none of this is.
Parents of OI kids don’t always get a free pass for the blame though.
“I met a mom; they took her kid from her. Her little boy was simply running after a dog and broke both of his legs,” Brittany said. “They thought she was abusing him. She spent three months in New Orleans trying to get her kid back before they finally diagnosed him with OI.”
For that reason alone, Brittany feels it was a blessing in disguise that her daughter broke her leg at birth.
In January, at the age of 4, Krisslynn finally broke it again - her first broken bone since the day she was born.
“She was jumping on the bed like a monkey. She was just jumping, and it snapped. I heard crying and I hadn’t heard that cry before. I noticed a bump in her shin, and she’s screaming, not wanting me to touch her, nothing. So, at that point, I knew it had finally happened.”
As doctors put her in a full leg cast and her first wheelchair, Brittany decided to finally explain to her daughter why she must be a little more careful next time.
“I told her, ‘This is why Mama tells you not to jump on the bed. Your bones break easier than other kids.’ I didn’t tell her about her disease before because I didn’t want her to use it as a crutch. So now she believes that she just has soft bones, and she knows to be careful, but other than that, it hasn’t affected her at all. She is still herself; she still runs and tries to jump and do all the things.”
Some parents who have never walked a day in Brittany’s shoes may say it’s time to slow her down.
Brittany said that at this point, it’s not even possible. Then again, she believes that is for the best.
“Her physical therapist did tell me that because of me being the way I am with her and letting her do things, that’s why she is able to do them,” Brittany said. “I don’t stop her, I don’t make her ride in the wheelchair, I let her do it, and that has made her stronger. I’m nervous 24/7 with her, but I’ve always wanted to see what she can do. I don’t want to tell her she can’t do something and then watch everybody else do it. If she can do it, I’m going to let her do it. I want to let her figure out her limits on her own.”
A couple of months ago, just one week after removing her boot from her broken leg, Krisslynn decided she wanted to join tee-ball with her friends. An extremely nervous Brittany allowed her to sign up for the team, despite the obvious risks.
“She wants to do what other four-year-olds do. We throw the ball at home, and she would hit with the bat just playing in the yard, and she could hit, you know. So, we were like, ‘Okay, well, we’ll do ball.’ It’s the basics, but she loves it. she hits the ball and runs the bases.”
Due to her condition, she doesn’t run very fast.
Due to her spirit, however, Krisslynn has found her own way to do it.
“Because she can’t run as fast as the other kids, our motto is: Where do we hit it? And she says, ‘Out of the park!’ She knows that the harder she hits it, the further the ball goes, the more time she has to make it to first base.”
Brittany has literally taught her kid to swing for the fences, and that is a lesson that has transferred off the ball field, as well.
When asked to describe herself, four-year-old Krisslynn didn’t have to find the words: “I am very, very, very, very, very strong,” she said.
“She’s very independent,” Brittany added when asked to describe her daughter in one word. “She doesn’t let anything stop her. If she can go, she’s going.”
“I think she gets that from me,” said one proud mom.
Unbreakable spirit. That’s genetic too, apparently.