GET-A-HEAD: Mum says health visitor check saved her baby's life

A mum whose baby was diagnosed with a life-threatening brain condition called hydrocephalus is highlighting the importance of health visitor contacts to help identify life threatening illnesses.

Together with Harry's Hydrocephalus Awareness Trust we're pushing the GET-A-HEAD campaign, which is calling for improvements to baby health care across England. The aim is to end the post code lottery of support that's currently offered to newborns when it comes to contact with health professionals, in order to prevent medical conditions slipping through the net.

Vicki Child reached out to share her story after hearing about the campaign in our radio news bulletins.

Her daughter Dorothy, now 16 months old, was diagnosed following her 6 week check with a health visitor. She recognised that Dorothy's head was growing more rapidly than expected. Using a paper tape measure, the health visitor was able to chart the head circumference in the Red Book, compare it to the measurement given at birth, and see that the change in head size had been dramatic.

Vicki, who lives near Glasgow with her husband and four children, is certain that the visit saved her daughter's life: "The doctor told us if she'd had to wait another 2 weeks to be seen, she would have died. Her condition was really severe and there was nowhere for the excess fluid in her head to drain. If we hadn't seen a health visitor who'd measured her head at 6 weeks, she would have died - it's that clean cut."

The Scottish Government has recently invested £40m in the Health Visiting service, allowing for the recruitment of at least 500 additional health visitors to deliver a new pathway of support. It means every baby in Scotland is now guaranteed 8 contacts in the first 12 months of life. It's something Vicki's daughter benefitted from, after they relocated from England.

"Before we moved to Glasgow we lived in Plymouth. With our previous children, we didn't really see the health visitor. If we still lived down there, we don't think she would have received the same care as she has up here. We're so lucky that we had such a good and experienced health visitor here. Even though she didn't know exactly what was wrong, she knew something wasn't right."

Within hours of the health visitor's routine appointment, the family had been advised by a GP to immediately go to the hospital.

"We got seen really quickly, she had a CT scan and got put onto a ward. The doctor came back and told us that she had something called Dandy Walker and also hydrocephalus, so the neuro team came down to see us pretty much straight away."

The diagnosis blindsided the family who had previously never heard of hydrocephalus. A rapidly growing head is one of the key indicators of the condition, and is one of the reasons why head circumference measurements should be taken and recorded routinely throughout a baby's first year.

"Dorothy is our fourth child and all of our kids had their heads measured, but we still didn’t know about hydrocephalus. I always wonder why midwives or health visitors don't tell you why they're measuring a head. When they do the heel prick test - they go through why they're doing it, so I don't understand why they don't do it for this condition? For our own child, we didn’t know the symptoms of hydrocephalus at all. If we did, 1) it wouldn’t have been such a shock, and 2) it wouldn't have got so far, to the point that she nearly died from it.

"When they told us she needed emergency surgery, it was horrific. I was completely floored by it. Everything got turned on its head and I was trying to process information without knowing that much information.

"After everything happened with Dorothy I got really bad postnatal depression, I think it was the guilt more than anything else. I researched the diagnosis so much and learned everything there is to know about it, but it's the guilt from the fact I didn't know she was so poorly that really ate me up."

After a very difficult first year, Vicki says Dorothy is doing remarkably well, despite living with two conditions.

"When she had her surgery, she came out and she was like a different baby. She was smiling and was able to look upwards for the first time. It's amazing how having the treatment completely and utterly changed her."

The GET-A-HEAD campaign is calling for improved national guidelines in England that would standardise the care given to babies, including more contact, better communication with parents, and clearer pathways for health professionals to escalate concerns about a child's symptoms.

The signs of hydrocephalus include:

• A rapidly growing or unusually large head
• A thin and shiny scalp with easily visible veins
• A bulging or tense fontanelle (the soft spot on top of a baby's head)
• Downward looking eyes
• Poor feeding
• Irritability
• Vomiting
• Sleepiness
• Muscle stiffness and spasms in your baby's lower limbs

• hydrocephalus