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Hearing the Words 'Osteogenesis Imperfecta' After My Daughter's Birth

I’m sure any mom can agree when I say the last weeks of being pregnant can sometimes feel like straight-up torture. You can’t see your toes, you can’t breathe, and you are willing to do just about anything it takes to get that baby out. I did not have this feeling with Maddox. The few days before my scheduled induction, right up until the car ride there, I cried and kept telling everyone I didn’t think she was ready. I was so desperate to keep her in my belly, when I look back now, I think it was because my soul knew she was much safer in there.

The first night I had to spend the night away from my son, Mason, was April 1, 2016. I loved on him and said my goodbyes and told him he would see us soon (so I thought) and that soon he would meet his baby sister at the hospital. Honestly, it’s a moment I still grieve, as we were never able to have it.

We drove to the hospital for my scheduled induction. After they induced me, they told me to head home and come back tonight if I was feeling anything or, most likely, tomorrow morning. Well, I didn’t make it to the elevator and I knew I wasn’t going home. After what felt like the quickest labor ever, a 6.90-pound beautiful baby girl was born. While she was on my chest, I took a picture of her that still hurts my heart to this day. Pure pain. I could tell by the way the doctors were looking at each other that something was wrong. It felt like every parent’s worst nightmare. They noticed very quickly that her leg was broken, thanks to an amazing woman who was on call that night. That I will forever be grateful for. After they took her to get some tests, they came in, and that was the first time I heard the words that forever changed my life in so many ways: “osteogenesis imperfecta.”

I remember seeing the same fear that I felt in my heart on my mother’s face, as I realized we were both immediately googling these strange words. All I remember seeing is, “Type II osteogenesis imperfect (OI). Most cases die within the first hours of life.” Everything other than those words were blurry. They told me they were taking her to Edmonton, an hour and a half away, by ambulance. Since I just gave birth, I wasn’t allowed to go. That was, to this day, the hardest day of my life. I snuggled my girl carefully until the paramedics walked in and said they were ready. I helplessly watched them take her away and honestly, I wasn’t sure if I would see her again. I swore in those moments that god willing, I would never leave her side ever again throughout this journey — a promise I have kept to this day and will continue to do so. Through every X-ray, cast and upcoming surgery, I will be there.

That night I watched Kyle sleep on the floor of the hospital because he refused to leave and the moment the doctor walked in the following morning, we were ready to go. I remember the doctor asked me what names we were thinking about and we said we have been talking about the name.

“Maddox,” I said.

“What a strong name for a strong girl.”

I knew that was her name. The following days thankfully were filled with good news in regard to Maddox, even though the hospital stay at the Atollery was a living nightmare that I will never forget, and still haunts me to this day. She was sent out of the NICU when all of her tests came back great, and she was eating and gaining beautifully. At this point, people thought she was just a healthy baby with a random bone break at birth. They sent us home, and it was the beginning of a long seven months of wondering and fighting.

There are many types of OI (almost 20 identified types now). Some people with type 1 can go their whole life without breaking a bone but can still have this condition, where as some children at Maddox’s age surpass hundreds of broken bones, many just during birth alone. Maddox has a rare mutation and doesn’t really fall under a specific type, but we can say she is moderately affected. She has had, at this point, six broken femurs, a broken arm, broken collarbone, broken ankle, compression fractures in her spine, and most likely some hairlines we can’t detect. Most recently, she had three surgeries to received Fassier-Duval (FD) rods that will be life-changing for her. After much time spent in a spica cast, she is now weight baring and taking steps -something we were never sure she would do.

Maddox is a very bright little girl and she lights up every room she enters. She’s so kind, and a complete force to be reckoned with. Her and Mason can be best friends or full-blown enemies, it really depends on the day. He is very aware of her bones and is fully gearing up to protect his sister in the future.

After I had Maddox, I had to pull strength from the deepest parts of my soul I didn’t even know existed. Now I feel stronger than I was before, and ready to help her flourish into a person who does not have to be defined by her condition.

I feel confident in our parenting skills, and know we can raise her to believe in herself by just getting to witness the people who believe in her.

This story originally appeared on Maddox Made Strong