A mum who said doctors only gave her baby a scan to "put her mind at ease" was later hit with a devastating diagnosis.
Victoria, 32, welcomed little Seb into the world two years ago. However, he was so distressed after the birth that doctors placed him onto a ventilator straight away.
An ultrasound scan at five-days-old revealed the baby had a cyst on his brain. Though Victoria was alarmed, she was reassured the growth was nothing to worry about.
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But over the next few months, the mum, from Chorley, noticed small traits in her son’s behaviour that she did not believe to be normal, the MEN reports.
At six-months-old, Seb could not sit up without toppling over and was unable to eat solid foods. At nine-months-old, he suddenly became severely distressed and would not stop crying.
Victoria said she instinctively knew something was wrong, and so she and her husband Alex took Seb to see a doctor, where they were told he had an infection.
Seb responded to a course of antibiotics at first, but they stopped working two days later. As his distress continued, Victoria took Seb to an urgent care centre but was told he was not unwell.
Determined to help her son, the mum didn’t give up and took Seb to see a GP but was once again told there was nothing wrong. Over two weeks into his symptoms, Victoria returned to the urgent care centre where medics finally agreed to admit Seb to hospital.
Victoria said: "They did blood tests and couldn’t see anything wrong. I told them I wasn’t going home until they had done a scan on his head because I knew he had this cyst.
“They were trying to tell me it was a prolonged reaction to a viral infection but they would do a scan to put my mind at ease. And lo and behold – he had hydrocephalus.”
Hydrocephalus, also called “water on the brain”, is a build-up of fluid on the brain that can cause pressure and subsequent damage to the skull.
One key symptom is a rapidly growing head, but it often presents alongside several other symptoms including vomiting, unsettledness, sleepiness, poor feeding, a shiny scalp with visible veins, eyes that gaze downwards and a regression in the baby’s skills.
If the pressure isn’t relieved, it can interfere with normal brain growth and development and lead to permanent damage in the brain and can be fatal. Thankfully, the condition was caught before Seb suffered any significant brain damage.
Victoria added: “I was being given a diagnosis that I didn’t understand. I remember ringing my mum after to tell her, and I couldn’t even pronounce it.
“I thought I’d worried about everything, but evidently not. Reading that it’s incurable and it’s a life-long thing, it's so much to take in. It’s completely overwhelming and scary; your mind races to all the worst-case scenarios and you hope to God it won’t be your reality.”
Seb was rushed for emergency brain surgery the following day, and underwent three more in just six weeks. He is now now being kept alive by a device called a "shunt" implanted inside his skull, a small tube that drains the excess fluid from his brain and takes it to his abdominal cavity to be reabsorbed.
Sadly, Seb faces the real possibility that his shunt could block at any time, meaning he would need yet another brain surgery to rectify the problem.
Victoria continued: "It’s been genuinely horrendous. It was really traumatic having to watch him be ill at the start and then go through the process of being ignored and knowing you were right all along.
“Watching him go through all the surgeries was horrible. After them, you think he will be okay, but he’s not really because he will always have this anxiety that he will need brain surgery again and that’s hard to deal with.
“It’s isolating because your mum friends don’t really get it. Whenever he has a cold or something, I think, is it just a cold? Or has his shunt failed? It’s the worst anxiety. I can’t even explain it.”
Victoria is now part of a GET-A-HEAD campaign, which was launched to raise awareness of the importance of head circumference measurements in a child's first year.
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