“‘What did you do to your child!’ I looked back at the ER doctor with what I’m sure must have been a blank bewildered stare on my face. I hadn’t really grasped the accusation he had thrown at me yet. I was still trying to comprehend and process the information that I had just received. How could it be? It wasn’t possible was it? How on earth could my precious little Hadley have been hurt? She was only one month old. We were just getting ready for her first Christmas with our family. I couldn’t understand how, but there was the evidence right in front of me. Undeniable proof that she indeed was hurt and hurt badly. I had a little experience with x-rays in the past. I was no expert, but I could definitely see the fractures. I may not have known a lot about X-rays, but I did know what it felt like to break a bone. I still remember vividly the intensity of the pain I felt when I fell off the playground bars after school and snapped both bones in my left arm. That pain had been horrific. That was only two bones. How could my precious little one-month old baby have four broken bones at once!
‘Do you understand what I’m asking?’ The doctor continued. ‘Child protective services and the Police department will be here shortly to discuss this further with you. Now I’ve ordered a full cat scan so that I can go determine if you have caused brain damage to your daughter!’
My mind was still in a whirl, but I finally started to get a grasp on things. The accusations continued to come. At this point we had been in the ER for almost three hours. It was the day before Christmas Eve and Hadley had been crying and crying all day. Nothing we did seemed to settle her down and help her feel better. We could not figure out what was wrong. I finally decided to just take her into the emergency room and see if they could help us.
I finally responded to the doctor and the CPS officer. I said, ‘I am happy to answer any questions you have I will tell you everything I know. I’m not sure how she got hurt. I’m not going anywhere. I came here to try and help Hadley my daughter. She is in major pain. What can we do to help her? What can she have for pain medication? I’m not going anywhere… just please help her. In my own mind I knew that there was no way someone had abused Hadley. I had the feeling deep within my heart that she was going to be faced with some difficult unique challenges in her life. I knew at that moment that my life and my family’s life was going to change forever. I was terrified because I didn’t know what was wrong or how on earth, I was going to help my daughter. At this point we finally got a hold of our family doctor. He had known us for years and came to our defense. He was looking at the X-rays and started to wonder if Hadley might have a condition called Osteogenesis imperfecta. All the pieces started to fit together. Her injuries were in fact due to this condition. He explained that she could get help from special doctors down at Shriners Hospital in Salt Lake City.
I remember just crying and crying there in the hospital as I thought about Hadley and the trials she would face. What would her life be like? Would she grow normally? Would she ever walk? Would she have a normal life like I had hoped for her? The questions were endless and I had never felt so scared.
Each time we hear the dreaded cry we know Hadley will is hurt and has a new break. After 90+ broken bones you might think it gets easier, but I can promise you it doesn’t. Watching Hadley endure the terrible pain that comes with each new fracture is heartbreaking. As parents our job is to keep our children safe and try to avoid most of life’s pain. No matter what my husband and I do we can’t take away Hadley’s pain and struggles, we can only watch as our beautiful daughter endures a painful life of broken bones and many surgeries.
As time moved forward, we were able to get a grasp on how to help Hadley thanks mostly to the experts at Shriners hospital in Salt Lake City (250 miles away) and some friends we had made that had a daughter with a similar condition to Hadley. These people were an absolute miracle for us and helped us to understand how to help Hadley. With each year of her life Hadley has faced different challenges. The first couple of years it seemed like she was always in a cast or getting ready for or recovering from a surgery. One of the most difficult things about brittle bones disease is that you are in a constant state of danger. The smallest things can turn into major problems. For example, you could never let Hadley just go off on her own if you took her somewhere. Simply stepping or tripping would mean that she could break a femur and be in the emergency room, or worse fall and hit her head and suffer a major skull fracture. Both of these scenarios have happened several times. Learning how to deal with that stress is very difficult. Hadley has gone through so many different surgeries, but it never gets easier. Especially when we it’s time to hand Hadley over to her surgeon and watch them go back to the OR. All we are left to do is hope and pray everything goes as planned. In order for Hadley to be able to walk she has to have special rods placed inside of her leg bones. Without these she would not ever be able to walk. As she grows the rods have to be changed because they’re not long enough to support her legs. She has had 15 surgeries in her short lifetime with many more to come.
Hadley also receives an experimental drug that helps give more density to her bones. This drug is given through IV Every six weeks she goes to the same hospital that is 250 miles away and receives this treatment. She also has many appointments every week from Physical Therapy, counselor appointments, to Wheelchair appointments… These treatments, therapies and the rods have improved Hadley’s quality of life. It is often said of children with OI that they have breakable bones but an unbreakable spirit. This is how we feel about Hadley. She is an amazing example of resilience and toughness. She is constantly trying to push herself to do more and more. The very fact that she is able to walk is a miracle to us. Without the help of Family, friends, and amazing doctors her life quality would be sadly reduced. We are proud of Hadley and the direction she is going. We know she will be successful in the things she does because of her unbreakable spirit!
Fast forward five years…
Over 90 broken bones.
15 surgeries (Rods placed in her bones)
IV treatments every 6 weeks.
Thousands of miles traveled to hospitals.
Physical therapy twice a week.
Several scary head injuries.
One simply amazing girl!
Hadley Larsen is 6. Hadley was diagnosed with a rare genetic disorder called Osteogenesis Imperfecta, or brittle bone disease. Osteogenesis Imperfect or OI is caused by a lack of collagen produced by the bone which in turn causes the bones to be extremely brittle and fragile. Most commonly known side effects of OI is broken bones. OI can produce many problems for the individual, and not only in the bones, but in any area of the body that requires collagen such as your Muscles, heart, lungs etc. Fracturing is very common. In many cases without treatment and surgery the individual will never be able to walk. Depending on the severity of the form it can even cause death.
Hadley has had 92 fractures that we know of and it is certain that she will have more in the future. Hadley has also had 15 different major surgeries to have varying types of rods, including telescoping rods placed inside her femur and tibia bones.
Recently Hadley was sitting in her wheelchair waiting to go on stage to a crowd of 2,500 people to sing!
‘I’m so nervous! I don’t think I can do this!’ ‘Hadley you are going to do great! Just go sing like you have practiced. If you get scared remember to just picture everyone in their underwear!’ She laughs…’ Ok I’ll do that!’ The crowd of 2500 people had finally stopped cheering and were waiting for the special duet Hadley and her sister Kinzley were going to sing.
The girls took the stage and sang together words that I think reflect the life Hadley has shared and magnified to me. ‘Don’t lose your way with each passing day. You’ve come so far don’t throw it away. Live believing dreams are for weaving hold to the truth in your heart. If we hold on together…I know our dreams will never die. Dreams see us through to forever!’ (Diana Ross)
The crowd went nuts! They sounded awesome. Hadley despite her challenges did amazing! This is just one example of many that I could share where she simply inspires.
I guess I can go back to the question I asked myself in the hospital that fateful day. ‘Would she have the life I always hoped she would?’ The answer is that she has so far exceeded any of myexpectations and hopes I’m completely blown away! Hadley you’re amazing. Thanks to you I am a better person! You inspire the best in everyone! Get to know her too… she will inspire you!”
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