Registered Charity 1183086
In April 2020 our little Tabby was diagnosed with Hydrocephalus. I want to share our journey from finding out to where we are now.
Our story started at a routine health visitor appointment when Tabby was around 7 weeks old. Her head measured slightly larger than normal, but I was told it was nothing to worry about yet, but we would keep an eye on it. Fast forward a week and the world went a bit crazy, we were put into lockdown, and all health visitor appointments were cancelled.
We carried on our lockdown life as normal, but as the weeks went by I started to notice that Tabby’s head looked like it was getting bigger. It wasn’t obviously big when she was by herself, but in comparison to her twin brother it did look a fair bit larger. I decided to measure her head and plot it in her red book, and to my shock it was off the chart! I called the health visitor, who in turn called the doctor and a video appointment was arranged. We were then sent to the hospital.
The thing about Tabby’s symptoms is that she didn’t display half of the symptoms connected to Hydrocephalus. She had a larger head, but that was it. She wasn’t irritable, she didn’t sleep lots (in fact she barely slept at all)! She had never been sick and she didn’t have sunset eyes. If she wasn’t a twin I may not have noticed there was anything different about her at all.
After a day in the hospital it was confirmed that she had Hydrocephalus. It was then that the nurses said we wouldn’t be going home, and Tabby would be having her brain surgery the next morning!
I was in shock. I hadn’t properly said goodbye to my husband and other children as we had expected to be home. Due to Covid they weren’t allowed into the hospital, and we weren’t allowed out. Tabby had a slight cough, so she was tested for Covid and until we had the results back, we weren’t allowed to leave our room at all.
The time came for Tabby to be taken to surgery. At this point we still hadn’t had her Covid results back, so she had to be treated as if she had coronavirus, and therefore couldn’t have her operation on the Children’s ward. She had to be taken to the ward set up for the Covid patients. Due to this, the surgeons had to wear full PPE – masks, visors, body gear. I was told to put Tabby in her cot and 6 men wheeled her away, leaving me standing in a room all alone.
I broke. A little piece of my heart just got taken away from me and I was worried sick. I will never forget seeing them take her away. Usually mothers are allowed to take their babies down to the theatre and be with them when they wake up. As a mother your main purpose is to care for and protect your children, and I felt like I couldn’t do either at that point. Everything was out of my control.
Thankfully the operation was a success, and we were allowed home a couple of days later, on Easter Sunday.
Since the surgery, Tabby has been well and so far we haven’t had any revisions. For the weeks and months after her surgery, I was so nervous that at any moment she could take a turn for the worst.
I am a lot calmer now, and know that I just need to trust my gut and act if in any doubt. Although calmer, not a day goes by where I don’t think about Tabby’s condition. When she cries the first thing I think is shunt. When she doesn’t fancy food, I think shunt. When she has a long nap, I think shunt. It’s hard when she can’t communicate with us how she feels. Her life is in our hands so to speak, and the pressure of that is immense.
Since having her surgery we found out that the cause for Tabby’s Hydrocephalus is a Tectal Plate Glioma in her brain. It will be monitored yearly by an appointment with her neurosurgeon, alongside her Hydrocephalus.
This isn’t the end of Tabby’s story, but we remain positive, and will love and support her whatever is thrown her way. There will come a time when she requires more brain surgery, whether that be in the months or even years to come.
She is our little warrior and she amazes us everyday. She’s the cheekiest little thing you will ever meet. She is adventurous, charming and clever. We are beyond proud of her and we can’t wait to see what life has in store for her. The world is your oyster, Tabby!