Guest Blog: A day that changed everything for Caz and her family (all about Hydrocephalus)
At 36 weeks into my pregnancy, the room went very quiet. Lots of people started to come in and stare intently at my baby's head, which by now was being projected onto a big screen in the dark scanning room.
Shortly after, we found ourselves sitting in the room. The room was a little white ‘Counselling Room’. I had walked past it on several occasions during this pregnancy and each time it had made me go cold. In the little room they gave me a tissue and a glass of water. Loss of brain function was mentioned, specialists were mentioned, unknown outcome....
We were referred as an emergency case to St George’s, a specialist hospital in London. Two days later we were told the baby had an arachnoid cyst and they wouldn't know the outcome until he (we knew by then that the baby was a boy) was born. We were told to prepare, if indeed we got lucky and the outcome was that good, for a long stay in special care. Despite all this we choose a name. The little thing that was hoofing me in my tummy was Harry.
We tearfully said goodbye to the children- and left, not knowing when or if, Harry would ever come home. Harry was delivered into a room with twenty-five specialists, and intensive care bed, all ready and waiting to resuscitate when needed. He defied everyone and came out pink, fat and screaming!
A few days later we were allowed home. Home to enjoy our ‘miracle’ baby and to get on with our lives, with the caveat that we need to come back in a couple of weeks to review Harry's scans and we must keep an eye on his head measurements. Two weeks later we were back. They pulled up his scans and showed them on the screen, the cyst took my breath away. Despite this, the Consultant was happy . Harry seemed fine, he could breath independently and his head wasn’t of disproportionate size. "Go home and treat him as perfectly normal baby" was his joyful message. We cried, we laughed and then we did.
Three weeks later however, Harry’s head had grown. Another MRI, more tests...more spine-chilling cold fear. During the second MRI, the Radiographer ran out; shouting don't feed the baby! He needs surgery now. Suddenly words like Hydrocephalus became a part of our daily vocabulary (seriously you shouldn't even be able to spell that.!) they talked about a Shunt; to drain the fluid from his brain, they talked about life chances, they talked about risk. I googled. Don’t!
On the 21st of December we kissed our beautiful baby and watched, as they took him out of our arms and into surgery, to fit a Shunt which would ultimately keep him here with us.
By the time Harry was one, he had endured 4 brain surgeries, countless rides in flashing ambulances and more blood tests and prodding than I can care to recall. Despite it all Harry, or Pudding as we all know him, is bright, happy and fills our lives with joy. Life without him is just unimaginable and so we knew we had to do more.
In response we have launched a charity to try and help more children like our Beautiful Harry. The charity is called Harry's HAT (Hydrocephalus Awareness Trust). I know, anonyms and hashtags are not my best. Harry’s initials are HRT and points for spotting the obvious mistake in Harry'sHAT!
Please do have a look at our Blog and website to follow our journey to help us, help children with hydrocephalus- the most common reason for brain surgery in children lead better and safer lives.
ABOUT THE AUTHOR
My name is Caz, I am mummy of four who works for a sexual abuse charity. My beautiful fourth child was born with hydreocpelus- a life threatening condition which basically means water on the brain. My mission now is to raise awareness of this condition which affects 1 child in every 1000 in the UK, help to fund research so that there is better treatment and also to connect with other families in similar circumstance.