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How a Hydrocephalus Diagnosis Led One Couple to Set up a Charity to Help Families Like Theirs

It was when Caroline, a mum of four from Surrey, was 36 weeks pregnant with her youngest, Harry, that she got the heartbreaking news that there was a ‘problem’ with his development.

After going through a gruelling battery of tests, the doctors identified an arachnoid cyst on Harry’s brain, which was potentially fatal.

On the advice of her medical team, Caroline gave birth to Harry surrounded by over 30 medical staff, all ready to whisk him off to intensive care. But, defying the doctors, Harry came out fighting. 

‘Harry was born pink, cross and screaming!’ Caroline said. ‘We were discharged a week later and told to go home and enjoy our miracle baby, just returning for standard check-ups.’

The moment things changed

Within just two short weeks, the doctors noticed that Harry’s head circumference had jumped – which prompted the need for an urgent brain scan. 

Caroline said: ‘Ironically, I spent the morning with the Countess of Wessex who had come into my work to congratulate us for 25 years of service for survivors of rape and sexual abuse.  

‘She’d spent all morning cuddling Harry, and just four hours later the radiographers came running out the scan room shouting “don’t feed the baby, he needs surgery now”.  

‘Just a few days before Christmas we kissed our little boy goodbye and handed him over for brain surgery, not knowing what the outcome would be.’ Caroline added.

Harry hydrocephalus operation

Nearly two years later

Despite having four major brain surgeries before his first birthday, Harry is now a cheeky two-year-old. But in order to survive, he relies on a shunt in his brain that constantly drains away the excess fluid. 

Caroline said, ‘The emotions since Harry’s diagnosis have swung from utter terror to complete euphoria. Initially, they told me, “the baby had suffered a significant loss of brain component”.  We were led away through the hospital’s secret passages (so you don’t frighten the other pregnant women!), given tea and basically told there was little hope.

‘It can be difficult for others to see when your child is unwell when they look so healthy on the outside’.

‘Harry’s shunt had once completely dislodged.  However, apart from his restlessness and the occasional vomit, there was no sign that he was as ill as he was – my instinct however kicked in and I knew he wasn’t right and a CT scan later that day confirmed my fears.’ She added.

Talking to others who have a child with hydrocephalus

‘Harry’s shunt blocked within three months of the first insertion.  It was during this time, whilst in hospital with him that we became aware that there was child on the ward with the same condition.  I desperately wanted to talk to the Mum, to learn from her what life as ‘hydro-mum’ was really like.  Poor woman – everywhere she walked, there I was!  

‘I just didn’t have the confidence or I was too exhausted to come out and ask her.   I had tried going on some Facebook forums but on the day I joined one a little boy had died.  It made me so shaky that I left the group on the same day that I had joined it!  (to be fair I have since re-joined and now find them helpful).’

When your child’s health condition means you’re on constant high alert

‘Harry’s condition means that we are on constant guard.  The shunt – which is basically the device which drains the fluid from his brain and keeps him alive, can block at any time.  This is a life-threatening emergency.  

‘The problem is that the signs of a shunt blockage: listlessness, vomiting, etc are also signs of other much less worrying childhood conditions.  However, the only way to tell is to subject him to CT Scan which he hates, or MRI which requires a general anesthetic.  At the last count, he has had nine CT scans and five MRIs.’

Turning adversity into an opportunity to help others

Upon digging for information on hydrocephalus, Caroline was shocked to discover that many nurses who work in the field of hydrocephalus have to fund their own training. And perhaps more surprising was the discovery that one of the world’s greatest children’s authors – Roald Dahl, invented a new type of brain shunt because of his son’s experience with secondary hydrocephalus. 

Caroline also noticed that there hadn’t been much progression in the field of hydrocephalus since the 1960s. She said:  ‘We felt that if there was little investment in research and little support for front-line workers, then what were the chances for Harry and for the thousands of children like him? We were told about other brilliant charities, but none that focused on hydrocephalus research or supporting nurses to access the latest training.  

‘Further for me, I wanted to talk to other Mums – I didn’t want to talk to support workers. As great as these people are, I wanted to talk to parents, those going through the same experiences.’

The birth of Harry’s Hydrocephalus Awareness Trust

It was then that Caroline and Matt started to think about how they play their part in developing research into hydrocephalus and for support for families like theirs. And with over 20 years of working with charities, and a string of national awards under her belt, it only seemed natural for Caroline to spearhead the launch of a new hydrocephalus charity.

‘Since we found ourselves in this world, we found shunts hadn’t really developed since they were first invented.’ Caroline said. ‘There also seems to be very little research into arachnoid cysts, which is the cause of hydrocephalus – so we’re on a mission to change that’ she added.

‘We want to help as many front-line staff understand the intricacies of hydrocephalus, so they can better help Harry and children like him.’

Harry’s Hat aims to improve the lives of children affected by hydrocephalus and their families through three key areas. 

  • Raising awareness of paediatric hydrocephalus
  • Funding research and training for nurses and front-line workers to improve the outcome for children with the condition, and;
  • Supporting families who have children affected by hydrocephalus.

Harry's Hydrocephalus Awareness Trust Event

Anyone looking to access support from Harry’s Hat, or to fundraise for the Charity, can check out their website, email them at info@harrys-hat.org, or call 07961001710.

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Friendili is a new social networking app. that uses clever technology to help families going through health challenges find other families like theirs. Members can match with others with similar hobbies, searching by location, child’s age, and diagnoses in common. To be one of the first to hear when it’s live in the UK and Ireland, you can sign up here. 

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