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By Alyce Collins and Chassidy Kelly Boutwell
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In late 2024, I learned that I was expecting for a third time. I had already been through heartbreak once, as my first baby died in utero at around 18 weeks.
While my third pregnancy seemed to be going well, I could never be too sure. Then my nightmare became a reality during the 20-week anatomy scan, which showed problems with the baby’s bones. All her limbs measured between four and six weeks behind where they should have been, and her skull was shaped like a lemon rather than perfectly round.
I asked my OBGYN if he thought this was osteogenesis imperfecta (OI), as I have always suspected that was what my first baby died of. He said no, as he thought it was a different form of skeletal dysplasia, so I was referred to a maternal fetal specialist for further assessments.
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Unfortunately, the specialist saw fractures and agreed with me that it was likely OI, otherwise known as brittle bone disease. It is a rare genetic disorder that causes bones to break like glass. The specialist believed that my baby’s case was lethal and strongly encouraged us to terminate.
I was devastated. I fell into the deepest depression of my life.
There was nothing I could do but drop to my knees and pray.
I then turned to the internet for answers. I reached out to other parents of kids with OI and to adults living with it. I refused to believe that hope was lost when there are so many people living with it—and seemingly thriving. I armed myself with the testimonies of people who loved life and were glad their mother refused abortion.
That was when I made the decision.
As long my daughter was willing to fight to be here, I would fight for her.
I found a maternal fetal specialist who was willing to do everything in her power to save my baby. We devised a special cesarean that went in through my previous C-section scar, removed the baby and uterus, and then cut the uterus both horizontally and vertically to cut it away from her. It was the safest option to minimize the risk of bone breakages.
‘Doctors Wanted to Wait and See, but for What?’
My beautiful daughter, Dani, was born on July 7, 2025, with a unique mutation on the 17th exon of her COL1A2 gene.
The fight that grew in me during pregnancy continued after she was born. I fought tooth and nail to get Dani pain relief and treatments in the NICU during the first two weeks of her life. Doctors wanted to wait and see, but for what? For her to die?
Dani required oxygen support and a feeding tube. She also required morphine and oxycodone to manage her pain as she had many fractures. The geneticists have never seen our exact mutation and, based on how it presents, they are guessing. She was diagnosed in the womb as type 2(the most severe form), and then subsequently diagnosed as type 3 (leading to short limbs and a deformed chest and spine).
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Although, I personally think she might be type 4, which is moderate severity and can cause growth complications.
OI is passed down through genes. I lost my first baby in the womb to it, Dani is severely affected by OI, and my great-grandmother was similarly affected. For it to have been handed down by me, I had to have had a very mild presentation. I’ve only broken three bones, but I have hyper-mobility and hyper-elasticity. I am on the shorter side, and the same is true of my father and grandfather in that bloodline.
Carolyn, my 7-year-old daughter, is extremely tall but has the same hyper-mobility and hyper-elasticity as I do. She has broken an ankle and a hip already and shows signs of old fractures.
Nevertheless, Dani needs the same care as any baby; snuggles, food, diaper changes, baths, love, attention. Our lives just look different to others.
She requires constant vigilance and careful handling. I have a certain way of holding her, picking her up, laying her down, changing her diaper, dressing her, bathing her, even brushing her hair. Everything requires careful planning and perfect execution.
At birth, doctors said there was no bone in Dani’s body that did not show evidence of an in utero fracture. Since she was born a year ago, she has already had 12 fractures. Her first break after coming home was her right upper ulna while throwing her arms out in the newborn startle reflex. She broke a rib coughing and broke her femur when she kicked her leg out in excitement.
Bone fragility is not the only complication for Dani.
Dani’s skull is severely affected by Wormian bones—deformities caused by OI, resulting in long bones that are bowed. Her skull is missing large portions and shattered in areas. In many places, her brain is only protected by her dura. The Wormian bones and early fractures to her lower legs mean she basically has four knees. This will have to be corrected if she has any hope of walking but cannot be corrected unless she grows large enough and her bone density improves. Furthermore, she has scoliosis, making that possibility even more unlikely.
There are many who assume a life with OI is excruciating, unbearable and not worth living. That could not be further from the truth because Dani is the happiest baby I’ve ever met.
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She is, by standard measures, behind on all her physical milestones. She cannot roll over or sit unassisted, but she is dexterous with her hands. Of course she has challenges, but that is what physical, occupational, speech, and feeding therapies are for. That’s what adaptive equipment such as activity chairs, medical strollers, and pediatric wheelchairs exist for.
When she suffers a break, we are trained on how to stabilize the limb with soft casting at home. We also have certain rules in our household, such as temperature control to prevent Dani overheating, and no one is allowed to pass things over her. Anything that falls onto Dani could cause catastrophic injury, even just diaper cream.
‘We Can See the Sparkle of Joy in Her Eyes’
Doctors were certain that Dani had the fatal form of OI and wouldn’t live beyond 28 days.
She proved them wrong. In fact, Dani thoroughly enjoys proving people wrong when they underestimate her. We can already see the sparkle of joy in her eyes when she impresses us or her therapists.
OI is finally gaining some awareness, however, there are still many people who have never heard of it or do not understand the nuances within it.
So, to any other parents facing this situation, listen to your heart.
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There is a lot of misinformation out there, and even doctors fall victim to it. If a mother does not think she can handle this life, then I hold no judgments against others who choose a different path. But I want mothers in this situation to be armed with facts, not misleading statistics or the opinions of doctors.
I was not a Christian before my pregnancy with Dani, but when we learned of her OI, I hit my knees and turned to Jesus. I prayed and told Him that if he let me keep my baby girl, I would spend all the rest of my days spreading his love and I gave my life to him.
Chassidy Kelly Boutwell, 35, from Mississippi, documents her family’s experience with osteogenesis imperfecta on social media (@danis_journey_with_oi on TikTok) as a way to raise awareness and educate others on the rare genetic condition.
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