At 36 weeks into my pregnancy, the room went very quiet. The type of quite that makes your hair stand on end and body go cold.
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 corner of the now cramped scanning room.
Shortly after, we found ourselves sitting in ‘that’ room. ‘That’ room was a little white and purple ‘Counselling Room’, which smelt funny and had some poorly placed fake lavender, faded by time and most likely tears, on the windowsill. 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. I still remember the Sonographer’s shocked look and lack of eye contact. I haven’t come across one like this before she said. Clearly breaking bad news wasn’t her strong point.
We were referred as an emergency case to St George’s, a specalist hosptial 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 breaking my heart, whilst hoofing me in my tummy was Harry.
On a Sunday night we tearfully said goodbye to the children, ready for a planned C-section the next day. At this point we didn’t know if or when we would come home, and whether two would be returning or three. Harry was delivered into a room with
twenty-five medical staff, Neonatal Consultants, and an intensive care cot, 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 to keep an eye on his head. Two weeks later and his scans were up on the screen. Despite the fact that the cyst took up a quarter of his brain, he seemed fine and his head wasn’t of disproportionate size. Go home and treat him as perfectly normal baby was the Consultant's joyful message. We cried, we laughed and then we did.
Just three weeks later however, Harry’s head had grown, significantly. Another MRI, more tests...and more spine-chilling cold fear. During the second MRI, the
radiographer literally ran out; shouting “don't feed the baby! He needs surgery now”.
Suddenly words like Hydrocephalus became a part of vocabulary (seriously you shouldn't even be able to spell that.!) they talked about 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 him 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!
The charity was officially registered with the charity commission on the 24 th of April 2019. This means that we are now a legally recognised charity. We now have the scary task of fundraising to enable us to achieve our charitable objectives. These are to: fund research and training into hydrocephalus, to raise awareness and also to
connect families affected by the condition. We have set ourselves a target of £50,000 in the first year. Not easy when everyone on our Trustee Board works and Matt and I have four children, inlcuding Harry to care for.
You can imagine my delight therefore when Freddie FoxandCo designed an
exclusive Harry’s HAT fabric. The items will look amazing and I can not wait to post pictures of Harry wearing some of the custom-made clothing that we have chosen.
10% of the profits are coming directly to Harry’s HAT and I just can not wait so see other children wearing Harry’s HAT branded clothing, which will not only look amazing but will help us to help more children like Harry.
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.