It was the day of my 20 week scan, I had a horrible feeling in my gut that they were going to give us some sort of bad news. I just knew something wasn’t right but nothing could have prepared me for what came next! The sonographer looked at the screen for a little too long, I asked her what is it? Is there something wrong?. She said “I’m not sure, I think I can see a cyst like structure on the babies brain, I’m going to get the consultant”.
I was 22 and because I had previously miscarried, I was terrified. Thankfully though I had Rhys’ daddy. He’s much more calm than I am. After the consultant had looked at the scan she agreed that yes there definitely was a cyst like structure, but it shouldn’t affect him. Fast forward 39 weeks 5 days, as well as many scans and appointments later to when Rhys was born on the 29/11/13 weighing a healthy 7lb 7oz.
He was taken for an ultrasound on his head and we were told that very night that the cyst would be “insignificant” to his life. Oh the joy! Fast forward 3 weeks at which point our nightmare began. The health visitor had been to see us and noticed that Rhys had lost a bit of weight as well as him being very sick every day after every feed. The doctors put it down to Rhys simply having acid reflux. This however got progressively worse and we were never away from the doctors for more than a few days at a time. We were also sent to the hospital a good few times. Rhys was put on multiple different medicines and milks, at one point he was even given lactose free milk in case it was an allergy.
I began to feel as if I was losing my mind, I knew there was something really wrong with my baby boy, call it mothers intuition, but absolutely no one would listen! I was labelled a ‘frantic first time mum’ by a certain Dr who shall not be named. He personally wrote to my health visitor and advised she put me through post natal psychosis testing as he believed it was me with the problem, not Rhys!
Thankfully when Rhys was 12 weeks old he under went an MRI Scan and that’s when we found out that the “cyst like structure” was actually an Arachnoid Cyst that had tripled in size and was continuing to grow. It had stopped the CSF flow around his brain which was causing a horrendous amount of pressure to be put on it. But by some stroke of luck the pressure had only affected the cerebellum. We were told Rhys was needing emergency surgery. This was on a Saturday morning; they said we would need to bring him to ward 7a (old Yorkhill) on Monday morning at 9am. He was at risk of seizures and a stroke but we took him home and muddled through the weekend. First thing on the Tuesday morning Rhys went for surgery. His first operation was an EVT which is a scope to try and make a hole for the excess fluid around his brain. Unfortunately that didn’t go to plan so he had to get a VP shunt fitted. We got to take him home after just 4 days. Thankfully we’ve never had any major blockages or malfunctions but we are aware that they can happen at any point. I think of it as a ticking time bomb, who knows when or even if its ever going to go off!
Rhys had to have 18 months of physiotherapy to strengthen his muscles. The weight of his head had quite literally weakened his neck muscles as well as the Hydrocephalus making him too unwell to do anything other than live another day. Now 5 years on Rhys is at school and playing football with the local club, which he loves and looks forward to every week. As well as playing football Rhys loves just being with his friends, he’s one of the most popular, friendly and overall kind children in his class, something his teacher can attest to. He talks to and plays with anyone so he’s always in the company of several friends. The school who have been utterly brilliant with Rhys have even put a care plan in place with the help of his consultant that describes his condition including the signs and symptoms of shunt blockages to look out for and advice on what to do. I’ll never forget how lucky we are with our boy! He beat the odds time and again. Many people have no idea what Rhys has and are actually quite shocked to hear as he doesn’t give any sign of having Hydrocephalus.
His balance and coordination aren’t great, they’ve definitely been affected but he doesn’t often let it get him down. He struggles with his writing but he’s slowly but surely getting better. Of course there are some days it gets to him but we have a pep talk about how brave he is and for to never give up. He just keeps trying & fights on for another day. None of us could have gotten through such a tough time without Rhys’ daddy, my fiancé Craig, he was incredible and so strong, always fighting Rhys’ corner without a second thought. For supporting me as well Thank You.
Written by Rachel, mama to Rhys, Ryan & Leo x
In loving memory of👼🏼
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