'Our little miracle' – Mum shares her story for Hydrocephalus Awareness Week
When Mum Beth Kelly was pregnant with her first son Charlie, she was told he had a condition called Hydrocephalus, a disease which causes fluid to build up in the brain and raise the pressure inside the skull.
Beth, Phlebotomist from Dudley, talked to us about their journey.
Beth said, "My husband Daniel and I had tried for ten years to have Charlie, so you can imagine our delight in finding out we were pregnant with our first child. During our first scan, everything seemed to be going smoothly, but when we had our gender reveal scan, we were told something wasn't right."
It was later confirmed that their son had Hydrocephalus, a condition that can make children very unwell and can be life-threatening if left untreated. They were referred to our Birmingham Children's Hospital's specialist Neurosurgery Department for treatment. Katie Herbert, Clinical Nurse Specialist and Mr Rodrigues, Consultant Neurosurgeon, were part of the team that oversaw their treatment.
"The team kept a close eye on Charlie throughout my pregnancy and also kept Daniel and I informed throughout,” said Beth. “We were told the worst-case scenario, that Charlie's condition could cause significant damage to his brain due to pressure from the fluid. It meant he might be unable to walk or talk.
"It was a really tough time, every scan made us more and more anxious, but we were determined. We had tried a long time for our baby, and we would go through everything and anything for Charlie."
Despite all odds, Charlie was born on 29 September 2018 and was doing well. When he was just two days old, he underwent surgery to have a programmable shunt inserted to control the flow of fluid to the brain. It's a surgery performed on over 140 children every year here at our specialist unit.
Beth added: "Katie, Mr Rodrigues and the whole team were amazing
. They were always on the other end of the phone should I have any concerns and supported us throughout Charlie's surgery and our whole journey. I can't thank the team enough. They saved Charlie's life and we are so grateful."
Now three years old, Charlie is starting his first year at nursery.
"We expected the worst and took every step as it came, but Charlie has come on so much, and we are so proud. He was walking at 18 months and said his first words early on. He is such a funny, happy child; he is our little miracle," said Beth.
This Hydrocephalus Awareness Week, we want to increase awareness of the condition, which affects approximately 1 in 1000 children and thank our hardworking Neurosurgery team, who are by the side of patients and families all year round who are living with the illness.
"It's so important we raise awareness for this condition for all the family's going through experiences like ours," Beth added. "I hope that by sharing my story, I help other mums and dads through their journey."
