‘He is broken and breaking,’ the doctors said. ‘No hope. Always fatal.’: Newborn with Brittle Bone Disease diagnosis defies the odds to become family’s ‘fighter’

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Disclaimer: This story may be triggering to parents of medically complex children.

“September 12, 2018, mid-day, the world stopped for our family. News that knocked the breath out of us. This child, already so incredibly loved and wanted. Something was wrong, something life altering. We are changed forever, irrevocably and undeniably changed. Be it good, bad, or indifferent we are changed. The news? Our little man, Leo, has a disease called Osteogenesis Imperfecta…brittle bone disease. ‘He is broken and breaking,’ say the doctors. Type 2 they tell his parents, no hope. Always fatal. He may die during pregnancy or, certainly, shortly after birth. ‘It would be kinder to terminate,’ they tell his mom and dad.

I was at work when I got the phone call. My baby girl on the other end of the phone, her birthday, she tries to get the words out and just can’t. Her husband takes the phone and tells me what they know and then hangs up to take care of Leo’s mommy. Devastated, I went back to my desk after the call. Trying, and failing, to hold it together. A coworker takes notice and asks what’s wrong. I blurted the words without realizing it, Osteogenesis Imperfecta, hardly even knowing what I was saying, certainly not knowing what it really meant. My coworker commented that it sounded like something you would see on Grey’s Anatomy, how right she was. In a daze I went to my car, calling Leo’s grandfather on the way. Barely able to breathe and in a daze, hearing Leo’s parents’ devastation through the phone lines…there are no words. There is no way to convey what we as a family felt that day and in the days that followed. Seeing the strength that Leo’s Mommy and Daddy had, and still have, leaves me in awe of them.

Within a week we, Leo’s family had discussed all of the possibilities. If the doctors were right…what was the right decision? To us there really was never a question. We would take what we could get, and pray they were wrong. So, feeling hollow inside, we did as the doctors had suggested. We planned a funeral for our boy. But then we decided to do our best to plan as though the doctors were wrong. Talk amongst ourselves about what life with Leo might be like. We spent the next 4 months in this manner. One of the few exceptions being Christmas. Leo’s mommy wanted lots of pictures with everyone she loved, in case it was the only Christmas she got to spend with her little boy. And so we did…at this time the doctors still all agreed Leo would not live beyond a week, and that week would be one of pain. I can’t speak for what we all were feeling at this time. That is an individual thing, and I don’t know that any of us has ever verbalized what we were feeling in those last days of Leo’s mommy’s pregnancy. We were now less than two weeks from Leo’s arrival.

This story originally appeared on Love What Matters.

January 11, 2019, at 11:10 a.m., in room 117, weighing 5 pounds 11 ounces, Leo Alexander came into this world. Crying, alive, and doing it on his own! The doctors were wrong! Was he perfect? No, he was perfectly imperfect, and he was HERE. Alive, and a fighter. That day, Leo began to show the world that he would write his own book.

Today, 6 months later, Leo is still holding the pen… The doctors told us he would be in the NICU for 3-6 months. Leo spent 19 days in the NICU of Vanderbilt’s Children’s Hospital. He was in Stallman NICU for 6 days, and then he was in Children’s NICU for 8 days, and then he was in the ‘home’ room for 5 days. There were many scary moments while he was there. But ultimately Leo overcame each and every one of them. And came home in less than 3 weeks!

Leo has had a lot of ups and downs in the past 6 months, life with Leo is like a roller coaster of the highest highs and the lowest lows. But those highs are more than worth it, and we are grateful for every second of every day. We were asked about moments that stand out to us, and to be honest, I can’t think of just a few things that stand out. Leo’s entire life stands out. He is an amazingly happy spirit and we see him touch and inspire people everywhere he goes. His family, most of all.â€

This story was submitted to Love What Matters by Cheyenne Potts. 

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