Support Families Who Have a Terminally Ill Child

Family Support Worker Jayne gives us an insight into some of the families she supports

I started working for Rainbow Trust in September 2007. The families I support are all very different: they have different needs, the ill children’s conditions are varied, the families’ situations are diverse and living with childhood illness and the trauma and stress this may cause manifests in many contrasting ways.

We listen and help practically without judging. We are there when families who are going through immense pressures and difficulties need us the most.

Noah is four years old with a heart condition and complex needs. Noah has just had major surgery which will hopefully see him into adulthood.

Noah’s mum, Clara, has some family support and I mainly provide face to face emotional support, two hours every week. It is very stressful and isolating to have a child with such complex needs. Emotional support is mainly about listening rather than giving my opinions. I am a sounding board and can suggest techniques to cope with difficult situations, manage negative emotions and I can offer potential solutions that may help in some instances. Sometimes a cup of coffee or getting out of the house with somebody like me could be just what is needed to help keep everything together.

We also talk on the phone twice a week, usually for about half an hour, to discuss anything that may be worrying her, and I go to some hospital appointments with them.

Daniel very sadly died four years ago. He was 12 years old and I had been supporting the family since 2016, following his diagnosis of cancer. They needed practical and emotional support.

I used to go to the house and spend time with Sandra giving her emotional support and helping with household chores whilst Daniel went to hospital for treatment.

Six months after the funeral Sandra told me that she would like to have a stone and plaque for Daniel’s grave. Her husband, Ryan, found this very difficult to cope with so I went with Sandra to the stonemasons to organise the delivery and unveiling.

I now pick Sandra up from home every month and take her to the cemetery to tend the grave. We used to do this every week but this is less frequent now that she is better able to cope. Sandra gets a lot of comfort from these visits. While we tend the grave we talk about her feelings, her grief and about when Daniel was alive.

I have been supporting Caitlin’s family since March. Caitlin is 10 years old and is being treated for a severe heart condition.

Caitlin and her mum, Andrea, had a whole day of appointments at hospital, involving lots of tests, meetings and check-ups to see if she is eligible for a heart transplant.

I drove them to this appointment, leaving home at 5am to pick them up at 6am. Whilst I drove, I listened to Andrea, who was very concerned about what was going to happen at the appointment. We arrived 20 minutes early which allowed me to show her around and try to make her feel more at ease.

Caitlin is scared about what’s going to happen, she knows her heart is not working well. Andrea is very upset because she may not be able to have a transplant. They both need support to be able to cope with this very traumatic situation.

Some days are very rewarding: a family may have positive news, or I can see that my help is really making a difference. It may even be that a family doesn’t need me anymore, which is always lovely because it means that they are doing well and able to cope. But some days can be very challenging. I am a keen gardener and my garden is my sanctuary; gardening is my coping mechanism. We are also provided with specialist supervision from a professional external counsellor once a month or more often if needed.

We also have supervision with our manager once a month and once a week we have a team meeting, where we have the chance to share and support other team members. Being a Rainbow Trust Family Support Worker is a wonderful and very rewarding job.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• Sponsor a Family Support Worker like Jayne

During a pre-eclampsia examination at 28 weeks, when Danielle was pregnant with her second child James, the doctors discovered that the baby’s heart beat kept dropping to a dangerous level, unable to bring it back up. Danielle had to be induced and James was born 12 weeks prematurely.

James was in hospital for the first four months of his life. When he was discharged, he needed home oxygen treatment and to be fed through a tube as his breathing is compromised due to suffering chronic lung disease.

Since birth James has had complex needs and requires looking after 24 hours a day. James is nonverbal, has low muscle tone and is unable to eat or drink anything. Nothing prepares a parent for this. Danielle says: “The world stopped when James was born as we weren’t expecting a child with such complex needs. He weighed just 1lb 4oz. James had a bleed on his brain at three days old which has caused cerebral palsy, developmental delay, visual impairment, hydrocephalous and many other conditions.”

Danielle and her husband Chris have now been receiving support from Family Support Worker Ema for nearly three years. Ema’s support was originally mainly for James and his now nine-year-old sister Bella, who found it hard with James being in and out of hospital. Ema has been helping them to have fun despite the day-to-day difficulties they face. These play sessions also provide an opportunity to give emotional support to both children. For Bella monthly one-to-one sessions give her focused “me” time. These sessions have boosted both children’s confidence and social skills.

Ema also provides much needed emotional support for Danielle at home and over the phone, focusing on helping Danielle to have more confidence in general and specifically around looking after James and to allow herself more time to heal emotionally.

Over the last three years, James has been in and out of hospital. This, together with the numerous medical appointments, presents many challenges for the whole family. As the family waits for a mobility vehicle Ema provides transport so they don’t have to worry about booking and paying for taxis, traffic jams and delays and can just focus on James.

At the end of 2021 James started passing out, losing control of his limbs and body due to a cyst on his brain. The cyst was causing a blockage and fluid was accumulating, increasing pressure in his brain.

Because of this, James recently had to undergo two brain surgeries.

Danielle says: “Rainbow Trust makes you realise that you’re not alone and that there are many other families who are in the same situation. The Family Support Workers can guide you to a more positive outcome in your life.

“Ema has gone above and beyond to help us. Ema is our own Nanny McPhee!“

Family Support Workers like Ema help families with a life-threatened child practically and emotionally.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for all you do to enable this.

Links:

• https://www.rainbowtrust.org.uk/about/familystories/james-story
• https://www.rainbowtrust.org.uk/