15 November 2012
I put this on before I had to delete my writers block account, some may find it upsetting. It is my story of my pregnancy with a baby who has a rare genetic condition. Just a heads up that some may not want to read. X
This is the Story of my son. I knew my pregnancy was not quite right from day one. I couldn't put my finger on it- call it motherly intuition. He was baby number five, and so many tiny signs you normally wouldn't have thought anything of made me wonder.
At our 5 month scan we were invited back for a more detailed scan. Baby had his legs tucked under his bum, so they couldn't measure his femur lengths.
The day of the second scan arrived and my world was turned upside down.
His legs weren't tucked under his bum, they were half the expected length they should have been. So were his arms.
But what we learned next tore me apart. He had several breaks in his arms, legs and ribs.
The safest place in the world is supposed to be in your mothers womb, but my baby wasn't safe even there.
The doctors were very straightforward. We had two choices. Terminate the pregnancy and save ourselves the suffering. Or continue with the pregnancy and have either a still born child, or watch as my child died straight after birth.
I felt I had no choice. I had to give my baby a chance.
We had scans every two weeks to check every step of his development. With every scan, the prognosis got more bleak.
We visited neonatal. We talked through the procedure for turning off life support. We planned my baby's funeral before he was born.
I prayed so hard every day for the strength to cope with whatever was written for him. The strength to carry on if I lost him. The strength to care for him if I was blessed enough to have the chance to hold him.
He was born early one cold clear morning. He was rushed to neonatal and put on morphine. He was born with fractures, approximately 16 that were in various stages of healing. He fractured two ribs during birth.
We couldn't hold him unless he was on a pillow. He couldn't wear normal baby hats, the seams could fracture his skull.
We were told he had 10 days before his lungs crushed his rib cage.
We took him home when he was 21 days old. But warned he could suddenly deteriorate with pulmonary complications any time during his first year.
I learnt all I could about his condition - severe brittle bone disease. I found support groups were other parents had been where I was.
My baby is now seven years old. He is in a mainstream school, independent in his power chair. He is often called the happiest most positive child in his class.
He has had problems- fractures, surgeries, unexpected medical issues. But he has met each new challenge with a smile and our unending love and support.
In the brittle bone community, we call our children snowflakes. Each child has different symptoms and problems. No two are the same. They are so delicate. Just like snowflakes.
He has taught me to fight for him. To be tough when professionals don't listen or understand. To be gentle and caring but a battle axe at the same time.
Most of all he has taught me to trust my creator who knows so much more than me. To listen to my inner voice. The one that told me to give him a chance.
Because a chance is all he needed.
Thank you for reading.
(We have a blog page about my son and his condition if anyone is interested, at qasimstory.blogspot.com)
Snowflake • Opuss № I