Victoria Wall looked over at her newborn baby boy from her hospital bed, his chunky legs wriggling around in his brand new sleepsuit.
Flicking through his red book, she pulled out a piece of card shaped like a teddy bear. ’Head circumference: 38cm,’ it read, scribbled in black biro.
“Head circumference?” Victoria thought to herself. “I’d rather have known his length.”
READ MORE: Join the FREE Manchester Evening News WhatsApp community
The new mum had no idea a baby’s head size was important and didn’t give the measurement another thought.
That was until six months later when she noticed her son Sebastian couldn’t sit up properly – leading to a potentially fatal diagnosis that would change both of their lives forever.
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 tot had a cyst on his brain. Though Victoria was alarmed, she was reassured the growth was nothing to worry about.
Over the next few months, the mum, from Chorley, noticed small traits in her son’s behaviour that she not believe to be normal.
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.
“I knew something was wrong,’ Victoria, who works as a journalist, told the Manchester Evening News.
Victoria and her husband Alex took Seb to see a pediatrician and was told the tot had an infection. They were given antibiotics which Seb responded to at first but they stopped working two days later.
As his distress continued, Victoria took Seb to an urgent care centre but was told the youngster 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.
“They then did blood tests and couldn’t see anything wrong,” she added. “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. Recalling the moment she learnt of his diagnosis, Victoria said: “It was really confusing because hydrocephalus is not well known in the mainstream. A lot of people have never heard of it.
“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’m really well researched and 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 – the first of four in just a six-week period.
The tot is 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, who is currently receiving treatment in Manchester, faces the real possibility that his shunt could block at any time, meaning he would need yet another brain surgery to rectify the problem.
“It’s been genuinely horrendous,” Victoria added. “And not what you expect when you set out on your journey to become a parent.
“It’s the exact opposite. 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.
This arm of the GET-A-HEAD campaign is now going further with its ambition to revolutionise health care for babies by asking for improvements in three areas including contact, communication and concern.
"Increased contact with health professionals can only be a good thing,” Victoria said. “In Scotland where they have recently changed their health visiting model, it has already been noted that increased contact between parents and a health visiting teams helps to foster positive and trusting relationships.
"Communication is also key. A parent feels much more at ease handing their child over to a professional if they understand what is happening - and why. It empowers parents when they have the relevant information and allows them to better advocate for their child.
"I think it's undeniable that in the majority of cases, early intervention is key to achieving the best outcomes for any child with a life-threatening condition."
READ MORE:
- 'I'm a private investigator - here are the the tell-tale signs your partner is cheating on you'
- 'Doctors told me TWICE the lump on my arm was harmless - now I have incurable cancer'
- Family given devastating diagnosis after noticing something on baby's eye
- 'Doctors told me I was fine - then a mole turned my life upside down'
- 'Why my champagne lifestyle just made me hate myself'
