Laura was born during winter lockdown and was a happy, breastfed baby for the first couple of months of life. Then everything changed. Laura began to be sick, a lot.
“Every feed would result in a complete change of clothing and frightening, projectile vomit of rust coloured watery sick.”
Laura’s mum, Natalie, contacted her health visitor who advised her this was reflux due to the introduction of formula milk at feeds. A week later, the health visitor visited Laura at home but was unable to touch her due to COVID restrictions. Natalie put Laura on the scales so that the health visitor could check her weight but no other measurements, including head circumference, were made. Laura was prescribed reflux medication and Natalie was advised to try a different formula milk. Laura continued to be violently sick and tried a further two specialist milk formulas with no improvements. Natalie contacted her GP.
Laura was seen by the GP who prescribed a different reflux medication and recommended a different formula but there was no improvement and the GP saw Laura again. Another milk formula was introduced, and a referral letter written to a paediatrician requesting further investigations into the reflux. Laura’s weight and head circumference were not measured at either of these visits to her GP.
Two months had now elapsed since Laura first began to be sick and Natalie noticed other worrying signs:
“Laura’s head looked much larger, and her eyes began to bulge.”
Natalie contacted her health visitor with her concerns who visited and measured Laura’s head. Yes, it was large but remained on a growth chart scale. She chased up the paediatric appointment on the family’s behalf.
Finally, Natalie received a call from her local hospital but was only offered a telephone consultation. She explained that she was extremely worried and that Laura needed to be seen by a doctor, so she was offered a video consultation. Natalie pleaded to see a doctor in person and said she would take Laura to A&E but was told not to because of COVID restrictions.
“As a mother, I was screaming out for help for my child. How can a doctor see a child over the phone?”
A week later, Laura’s head had grown rapidly, and she was finally seen by a paediatrician at her local hospital who immediately saw the problem. Her head was checked by ultrasound and fluid was found – hydrocephalus. Laura was transferred to a neurosurgery unit at another hospital the same day and underwent emergency brain surgery to fit a VP shunt the following day.
At that time, the cause of the hydrocephalus was unknown.
“The priority was to drain the fluid and relieve the pressure on Laura’s brain.”
The surgery was successful, Laura recovered well and was back home with her family after 3 days. Follow up MRI scans identified a low-grade glioma and cyst blocking the drainage of CSF fluid leading to hydrocephalus.
“My baby stopped being sick and was finally able to have nice milk.”
It has been 2 years since Laura’s shunt was fitted and she receives regular MRI scans at her neurosurgery centre to monitor her condition which is stable. Laura has open access to the children’s ward at her local hospital where she is known to the team with which the family have a great relationship.
“They make me feel comfortable and have always assured me that they wouldn’t hesitate to blue light us to the neurosurgery centre if they have concerns.”
Laura is happy, thriving, reaching her developmental milestones, and looking forward to starting preschool with her big sister. Natalie is thankful that Laura’s hydrocephalus was identified and treated to allow her to live her best life, but she is very aware that the outcome could have been quite different.
“My baby needed to be seen despite a pandemic and I was screaming out for help.”
Laura’s journey highlights the importance of raising awareness of the signs and symptoms of hydrocephalus in babies, of face-to-face health visiting and of recording head circumference measurements when a baby presents with unexplained symptoms.
And Natalie’s journey shows the importance of believing parents when they tell you that their baby needs help.
With thanks to Natalie for bravely sharing her story.
