Date published: 26 January 2023 by Katie Inglis

This January 2023, it is Parent Mental Health Day. Parent Mental Health Day aims to encourage awareness round the importance of parent mental health and its impact on the whole family system. Here at Rainbow Trust, we would like to share a story from a family supported by us that highlights the strain of having a seriously ill child on a parent’s mental health.

Danielle is mum to four-year-old James, and ten-year-old Bella. At 24 weeks pregnant, Danielle was told she had pre-eclampsia and would have to be admitted as an inpatient until she got as close to 40 weeks’ gestation as possible. However, at 28 weeks’ gestation, James’s heart rate was dropping to dangerous levels, so surgeons needed to deliver James 12 weeks prematurely. Danielle explained how she initially felt calm during James’ birth, but when he was delivered, it quickly became clear something wasn’t right.

‘I heard him cry when they took him out, and they had told me that he wouldn’t do that. When they took him out, the whole room gasped. And I thought, that’s not good. I immediately felt sick.’

When James was born, it became apparent that he had a number of serious and complex needs. Complications at birth led James to have the following diagnoses: James has cerebral palsy, he is fed through a PEG in his stomach, he has hydrocephalus, is severely visually impaired and is non-verbal.

After giving birth, Danielle did not get to see her new baby for a number of hours and was soon told they would be transferring him to John Radcliffe Hospital in Oxford for special treatment. Danielle was then allowed to visit James while he was in an incubator. She describes how traumatic and difficult seeing her son in that way was:

‘I just remember seeing him, and he didn’t even look like a baby. It was really hard. I looked at my husband and I said ‘I don’t want to see him. Get me out of here’. I didn’t understand’.

‘When I saw James in the incubator, I cried for hours. I don’t remember why I was crying. It wasn’t because I could see him, I saw wires and machines hooked up to James’s little body and he was kept on life support. I didn’t recognise my baby. I remember thinking ‘what am I going to do? This isn’t what my birth, that I had planned, was supposed to be like.’.

In the next few months, James underwent eight blood transfusions, multiple brain surgeries, he had sepsis, kidney issues, bradycardia, and tachycardia. Danielle said at one point there was so much happening that she had to stop and say, ‘I’m not ready for this, it’s too much’.

When James was in intensive care at John Radcliffe Hospital in Oxford, Danielle was visited by a mental health professional to help her through the trauma of what was happening. Danielle described how she found it extremely difficult because the sessions were delivered next to James, and she found it difficult to follow her advice in that environment.

‘At that point, I felt as if my emotions were not valid. I was not valid. I was nothing to do with the situation, this should be all about my son. I also had a daughter at home who for the first two months didn’t really see me due to being an inpatient for so long myself. This had a huge impact on my mental health and when James came out of hospital, I realised I needed to face reality.’

Danielle explains how when James was finally discharged from hospital, she was diagnosed with PTSD. With James’ many hospital appointments and the severity of his conditions often changing quite drastically and suddenly, it was impossible to commit to a regular therapy session. Danielle was told that after the third time of having to cancel a session, she would be removed off the list.

‘They discharged me completely. Then I realised I was on my own’.

Through learning more about James’s condition, Danielle explained some of the mechanisms that she has in place to help her cope with James’s condition and her own mental health.

‘It’s about celebrating the tiny moments – just for that moment thinking ‘oh that’s amazing’, knowing that it might not happen again. I know my expectations must be really basic. I’ve also learnt not to compare him to other children his age.’

Danielle and her family were referred to Rainbow Trust Children’s Charity through their community nurse. Danielle commented that she had ‘no idea’ what to expect when given the referral. But it wasn’t long before their Family Support Worker became a key support for the family.

‘Our Family Support Worker has been a blessing to us. If it wasn’t for Rainbow Trust, I don’t think we’d be where we are now. It just blew our minds how kind someone was to us, and actually interested in our lives and what we wanted’.

Their Family Support Worker supports the family by helping with transport to the hospital for James’ many appointments, providing sibling support for ten-year-old Bella, and day to day tasks to help lighten the load for Danielle. This has included helping the family move house when James’ medical needs meant they could no longer stay in their current home.

‘Nothing is too much. Everyone loves her. We can just relax. She’s like another member of the family. She comes into our house and it’s like home. We don’t treat her any differently – she’s just ‘our Nanny McPhee’.’

Danielle shared her advice for any parents struggling with their mental health who are caring for a seriously ill child:

‘It can be scary with someone new coming into your lives, someone who doesn’t know you or your child, all the ‘what-ifs’ fill your mind. Asking for help isn’t going to go wrong, it’ll probably be one of the best things you can do. It benefits you in so many ways. Rainbow Trust gives such a sense of relief – when they come with the big smiles on their faces and they’re so friendly, it was a complete breath of fresh air. It was someone I could talk to, without fear of judgment or being spread around. That was the loveliest part. It’s like having a friend who comes to chat to you, it’s like a reassurance.’

Danielle’s final message to families unsure whether to take the step for help was:

‘Just go for it. If you have a seriously ill child, there is so much to learn and so much to focus on that having Rainbow Trust is such a blessing. They are just like little angels who come help you when you most need it’.

Rainbow Trust Children's Charity are there for a family from diagnosis, treatment, through to bereavement if necessary. Donate to Rainbow Trust Children’s Charity today to help us support more families like Danielle’s.