Ethan's Story

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Marie and Wing are parents to one-year-old Ethan. A routine 36-week scan revealed Marie was measuring as if she were 40 weeks pregnant rather than 36, and another scan confirmed Ethan’s diagnosis: hydrocephalus. This is a neurological disorder characterised by a build up of fluid in the brain. Doctors booked Marie in for an elective C-section ten days later.

When he was born, Marie was allowed a quick cuddle before Ethan was taken to intensive care. Then, at two days old, Ethan had a tube implanted in the brain to drain away excess fluid. Five days after his birth, Ethan was moved to to the neurological ward at Southampton Children's hospital, then to the high dependency unit at two weeks, due to his oxygen needs, and then to the paediatric medical unit for another month.

‘There was a lot of back and forth visiting Ethan in hospital. He was on the neuro ward, but then he was struggling with his breathing so they took him to the intensive care part (HDU) of the children’s ward.’

Ethan’s older sister, Kaitlyn, was desperate to meet her new baby brother, but the hospital rules made this difficult:

‘It was stressful because it was at the time when siblings weren’t allowed in the hospital, and Kaitlyn was desperate to see Ethan.’

The family’s main challenge has been attending Ethan’s many appointments, and also helping five-year-old Kaitlyn adjust to having a new baby brother with special needs.

‘She’s very protective of him. She’s started to understand more about Ethan, and how he may be slower to learn things than she wants. She’s now realised he won’t be going to the same school as her and things like that. But she’s still determined to help him walk – we just take each day as it comes.’

Marie has given up work to be Ethan’s full-time carer – with Ethan’s many appointments it would not have been possible to work, and this has been an adjustment for her.

‘It was tough at first, getting used to understanding Ethan’s condition, and noticing if/when something is wrong – now we’ve learned and it’s easier, but I think we have adjusted well.’

Hydrocephalus runs in Marie’s family, and she sometimes struggles with guilt that Ethan has inherited the condition:

‘To start with, I did blame myself a lot. Even though I know it’s not my fault – but it’s just the guilt that he’s got the condition. We’ve learnt to take every day as it comes and not get too ahead of ourselves.’

Ethan’s family were referred to Rainbow Trust by their health visitor and started receiving support from Michelle in June of 2023. Michelle provides emotional support for the family and visits them at their home to spend time with Ethan and Kaitlyn.

‘I can talk to Michelle about anything, and Kaitlyn loves having her over too. Michelle will come over and spend time with Ethan, and this helps me get stuff done, or things that I normally wouldn’t be able to do – it’s such a big help.’
‘We’ve also been able to get tickets for both Paulton’s Park and Brighton Sea life Centre through Rainbow Trust – we went for Ethan’s first birthday. We all had such a good day.’

Marie finds the emotional support she receives from Michelle to be the most valuable:

‘Michelle is such a good listener. It’s good to have someone to talk to.’

Marie encourages other families who may need Rainbow Trust’s support to ‘reach out. You can trust them.’

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