Henri's Story

My little boy Henri is the youngest of 4 children, he was born following a very traumatic birth. He has been diagnosed with pseudoarthrosis of the left clavicle. The first time we noticed the clavicle deformity was when I was changing his nappy, at the end of January this year. He was 9 months. The fractured clavicle was protruding the skin, I was horrified as Henri wasn't even mobile...I had no idea at the time how it could have become broken. We rushed to the Emergency Unit, where my husband and I were placed in the spot light as we had presented with a 9 month old baby with a fractured clavicle....like so many parents stories I have read, everything was a blurr in the days that followed. Fortunately the Consultant reviewing the xrays a few days later, noted that it was a birth defect. We were then referred to a number of orthopaedic specialists, who knew very little about the condition. Our consultant told us he needed a week to research about it....in the meantime I had done my own research as I am also a paediatric nurse!! It was a very lonely place if I am honest....you have so many questions and there is so little information regarding the condition available....its been really hard to deal with as I am sure you relate. The hospital have been quite supportive although they don't have many of the answers for us. There motto is ....lets see how things go!! Easier said than done when you are the parents and it concerns your beautiful child. I have pushed for tests, and specialists. Henri is fortunate in so far as he doesn't have dextro-cardia (where the heart is back to front), however 2 consultants cannot decide whether it is congenital or birth trauma related. I personnally feel it was as a result of birth trauma, but nobody will admit this sadly in fear of the repucussions. So it is something we have to live with.

However despite everything, Henri has surprised us all. He crawled which we never thought he would do at 14 months, and has started walking at 17months. Yes its true to say the arm does give way, and he often headbutts the floor which is very upsetting to watch but he is my inspiration.....he is soooo happy! The fear is as he gets older that the shoulder will drop forward and mobility will become an issue, as the joint fuses. For the present time he has good mobility in the left arm, it is weaker and he will do most things with his right hand. Surgery is not an option until Henri is fully grown apparently as apparently he has major arteries running through the middle of his fracture, so any fixation would become complicated apparently. I do have pictures I could send you if you would like to see....

It is so nice to find a group with like minded people, who support each other...more does need to be researched about this condition.

I hope this helps....

 

Written by J.R.R. 27.10.10