“Hydrocephalus is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it.

If left untreated, hydrocephalus can be fatal.” – NHS

In April 2020 our little Tabby was diagnosed with Hydrocephalus. I want to share our journey from finding out to where we are now. I hope that by sharing our story it will raise awareness of this condition, as well as providing support for anyone going through something similar.

Hydrocephalus is a fairly common condition, but one that not many people are aware of. I certainly wasn’t when Tabby was diagnosed, and I am still learning about it to this day.

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 Wilf, 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, as no-one was allowed into the doctor’s surgery still.

We have the most amazing doctor in the world, and to this day I thank my lucky stars for him. I’ve seen online that this sort of thing can often be brushed off, but the speed at which we were seen, then sent to hospital to get a scan, was second to none.

At this point I was still none the wiser to Tabby’s condition. It was a worrying time as we were 3 weeks into lockdown and restrictions were really tight in the hospitals. Tabby and I sat in a small room with no windows all day, waiting for tests and scan results. After googling her symptoms (something that is never a good thing to do, but somehow us mums always find ourselves doing it), I had come to the conclusion that it must be Hydrocephalus. Although I thought this, the rational part of my brain kept telling me to be positive, but deep down I just knew. Call it a mother’s instinct.

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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. The hospital tried to do an MRI (we’d had an ultrasound and CT scan), but the feed and wrap to get her to sleep didn’t work, and we were told she would need to go under general anesthetic. We were sent to Noah’s Ark Children’s hospital in Cardiff that very same day, expecting to have her MRI there and be sent home.

When we arrived at Noah’s Ark, we were shown into a private room and settled in. It was at that point the nurses said we wouldn’t be going home, and Tabby would be having her brain surgery the next morning! They had enough evidence from the CT scan to know she had Hydrocephalus – the MRI would only determine the cause, and due to the current climate there weren’t many MRIs being done. They needed to act fast.

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I was in shock. I hadn’t properly said goodbye to Ross, Immy and Wilf 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. It took 2 days to get her negative results.

Although in shock, at this point I was still very much in autopilot. Yes I was worried and felt immense guilt (we still didn’t know the cause and I blamed myself. Why, I don’t know). I was just pleased to be somewhere that someone could help her. We were in the best place. We met the neurosurgeon who was going to operate in the morning, and I took in as much as I could, still remaining calm and pragmatic. I didn’t show any sadness, and I think it took them by surprise. But inside I was numb, trying to digest everything and wishing it was the next day so that they could help my baby.

Hydrocephalus can be treated by inserting a small tube (shunt) into the brain to drain away the excess fluid, which is then absorbed back into the body. There is another procedure called an ETV where a hole is made in the floor of the brain to drain the excess fluid. This is a more permanent option and one that in normal circumstances Tabby would have had. However, it’s also a procedure where the hole can heal over, resulting in the need for a VP shunt anyway. In normal circumstances they would then do an VP shunt, but due to Covid they only wanted to attempt one surgery, which is completely understandable. An ETV shunt is however an option for the future.

I barely slept that night. Tabby was hooked up to an oxygen monitor which kept beeping, and I was so worried she was going to go downhill. She was nil by mouth and was hungry when she woke. It broke me that I couldn’t feed her or comfort her. I breastfeed Tabby and Wilf and I was having to pump for them both, which wasn’t easy as the stress made it difficult to let down and I was in pain. I kept reminding myself though, this is nothing compared to the pain Tabby must be feeling, although you would never have known, my brave, brave girl.

The time had come 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, unable to leave or get any comfort from anyone.

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. They were the kindest and most caring men, and I could see in their eyes it wasn’t easy or a natural circumstance for them either. Usually mothers are allowed to take their babies down to theatre, and be with them when they wake up. One said “we’ll take care of her for you, I promise,” and I broke down. I have never felt a wave of emotion like it, and even writing this now I am welling up. I knew she would be okay, I had every faith in the neuro team. However, at the time that didn’t compensate for the pain I was feeling; so helpless and alone. 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. I felt hollow.

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Thankfully the operation was a success, and we were allowed home a couple of days later, on Easter Sunday. VP shunts are amazing things, but they aren’t permanent. They can get blocked quite easily, and in the first few months infection can happen. I was told the signs to look out for, and if in any doubt to take her straight to A&E.

Thankfully, since the surgery, Tabby has been well and so far we haven’t had any revisions. Hydrocephalus is a condition that isn’t curable, but can be managed with the shunt. For the weeks and months after her surgery, I was so nervous that at any moment she could take a turn for the worst. Her chest bruised where the tubing runs, and her fontanelle dipped in so much she looked like she was severely dehydrated. In our case these turned out to be normal side effects of the surgery, but it is always wise to get checked. In some cases, it can be just a matter of hours before someone with Hydrocephalus could lose consciousness, so you have to act quickly.

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. This is a small, benign brain tumour, and they usually remain quiet throughout an individual’s life. It pushed up against where the fluid leaves the brain, causing it to block. It will be monitored yearly by an appointment with her neurosurgeon, alongside her Hydrocephalus.

I will never be able to thank the NHS enough for everything they did and continue to do for Tabby. I will be forever in their debt.

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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. It’s thought that the Hydrocephalus didn’t cause any lasting damage to her brain as it was diagnosed quickly, and she is hitting all of her milestones. However, only time will really tell.

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!

If anyone has any questions about Tabby and her condition, or is going through something similar and wants to reach out, please do get in touch. I am always happy to talk. I can also recommend the charity Shine, who have been amazing.

20 thoughts on “Hydrocephalus – our story so far”

  1. Aw Lizzie this, like all your posts, is so beautifully written – well done. She’s so lucky to have you and Ross, and Immy and Wilf, amazing little family. Sending lots of love to you all x

  2. This is such an emotional piece. I can’t even imagine how you were feeling when they took her away especially with all the restrictions. As an NHS employee you put up a professional wall to help you cope with what’s going on around you but put me in your position and I would have crumbled. This is a great piece for highlighting this condition. Well done to Tabby for being an absolute hero 😘 xxx

  3. Thank you for writing what must have been a very difficult article but one that is so important in helping to spread awareness and understanding of the condition (which is what will actually help save lives). So glad to read that your daughter is doing well after her surgery.

    1. Lizzie Hutchinson

      Hi Mark, thank you so much. It’s definitely a condition that needs more awareness. Thanks for your comment x

  4. Lizzie I can’t even imagine how tough this must have been for you and Ross. This is such an emotional read. Tabby sounds like such a little trooper too. Lots of love Jo xx

  5. Hi tabby, I literally cried when reading. Really emotional. I can imagine how you must have felt on that situation alone with tabby in hospital. But what ever it is, all our well wishes and blessing to Tabby. As you have mentioned, she is a warrior! Just want to give big hug to you and Tabbh xxx

  6. Thanks so much for your honest and open revelation of your whole family’s experience. When Ross phoned me with the initial news, you and Tabby had left for the hospital, and I’m sure I have never seen and heard him so scared in his life. All I wanted to do was say SOMETHING to help, but what could that be? All I could do to console him was remind how fortunate she was to have a children’s hospital such as Cardiff’s would be. There’s no teacher of being a human as being a parent. Much love to you all!

    1. Lizzie Hutchinson

      Thanks Janet. It was such a worrying time for us all wasn’t it. Although it wasn’t pleasant being in the hospital with Tabby, I find it’s harder for the family at home to deal with. Xx

  7. Hi Lizzie and Ross, had no idea until now about this happening to you all. Big love and great to read your story so far. Kids are a game changer and I can’t even go to the place, that you must have been at. Stay strong. Sophie x

  8. Sending love Lizzie, what an ordeal but great she’s doing so well.
    I sobbed reading this. I should have a big brother, he was bird in 1959 with hydrocephalus. He died in 1964. Mum refused to ever talk about it.
    I’m so pleased to hear there are good options now and hopefully she can live a full and long life xx sending you love and strength xx

    1. Lizzie Hutchinson

      Hi Sarah. Thanks so much, and thank you for sharing your story with me. I’m so sorry to hear about your brother, I can’t even imagine how hard that was for your family. Sending you lots of love and I hope you’re well xx

  9. Oh Lizzie! You and Tabby were so brave! I also shed a tear when reading about them wheeling her away… I remember you telling me the story. Such a terrible moment but how wonderful that modern medicine, wonderful NHS workers and staying positive can make miracles happen. You guys are awesome.

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