Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
May 4, 2016

Me and My Miracle Baby

Miracle with Diana in hospital
Miracle with Diana in hospital

Me and My Miracle Baby

When I was 20 weeks pregnant, the doctors told me there was something wrong with my baby. They sent me to the hospital where they checked my baby and found that one of the arteries in her heart was not fully developed.

Every month they checked my baby girl and at 37 weeks they decided it was time and induced me to give my baby the best chance of survival. Hours later her heart rate dropped again and I was prepared for surgery but my brave little fighter stabilised – her heart rate became more regular and I was able to deliver her naturally. I was so happy and grateful when she was born, I heard her cry and I believed she was going to be alright. Her little heart was working so much better than doctors had expected so they had time to think about what they needed to do next.

I named her Miracle because, against all the odds, she had survived.

Miracle was put on oxygen and when she was just two weeks old, had her first open heart surgery to close the artery that hadn’t closed while she was in my womb. I waited with her  brothers, Stephan and Ezekiel, and sister, Sherray, for five hours and when Miracle came out of theatre, doctors said she had done really well. She will need surgery later in life but for now, she is okay. She has sleep apnoea at night so is on oxygen to ensure she gets the oxygen she needs. I have to take her off the oxygen to change her so she is having some time breathing on her own but I keep her on it 24/7 to be safe.

Soon after Miracle’s operation weI was referred to Diana, our Rainbow trust Cardiac Support Worker, for help. It was a huge handful taking care of three children and a sick baby and I was in need of help. Diana started taking me to the hospital when Miracle had appointments.

Francesco, one of Rainbow Trust’s Sibling Support Workers, started supporting Miracle’s brothers and sister too. When I am at home, Diana or Francesco take Sherray to the park and Ezekiel to nursery – it makes a big difference having that kind of help, without it I think my other children would have suffered more. It means I can devote all my time to Miracle and not feel guilty for it as I know my other children are safe and getting one-on-one attention. I feel bad not being able to give them all the attention they need but Miracle needs me constantly. It also means the older ones can still go to nursery and the park and do the things they want to so they feel less affected by Miracle’s condition.

I am still feeding Miracle every three hours and that can take up to 90 minutes. Having Diana there to help me makes such a difference to my day. I am so grateful for her support.

My children love Diana and Francesco and I trust them with my children. They are so happy to see them because they know they will devote their time and attention to them and them alone– they really love having Diana and Francesco around them. Without help, I couldn’t go shopping as I can’t push a trolley, a buggy and hold onto Ezekiel’s hand so when Diana comes, she looks after the children and I go food shopping. I appreciate her help so much and I don’t know what I would do without her and Rainbow Trust.

Stephanie

Feb 18, 2016

Harvey's Story

Harvey and Anna
Harvey and Anna

Three year old Harvey has spent two years of his life undergoing chemotherapy. Anna, his mum, had a normal pregnancy and birth so thought nothing of the blister-like mark on Harvey’s knee. Sadly, when he was just three months old, tests and scans revealed that it was a cancerous tumour.

Harvey started an aggressive eight month course of chemotherapy and had times where his white blood cells were so low that he was prone to the slightest infection so taking Harvey to appointments in London via train and tube was harrowing for Anna and Andy, Harvey’s dad. Anna said, “I remember being in a lift at a station, with Harvey in the sling and being squashed. I just felt it was so wrong for him having all these people so close to him when he had nothing to fight with.”

The family was referred to Rainbow Trust just after Harvey’s diagnosis. Anna was struggling with transport to the weekly hospital appointments. She had tried catching the train and tube but felt it wasn’t safe for Harvey. She had also tried driving up but the journey was so stressful and taking a coach was just as difficult as the trains.

Jayne, a Rainbow Trust Family Support Worker from the Surrey care team, started supporting the family and took Anna and Harvey to his appointments up in London. She’d spend the day with them while they waited for treatment. “Some days we’d wait five or six hours for his treatment and on a few occasions, I burst into tears when they told us we’d need to wait even longer. The pressure just got too much but Jayne helped so much by being there. I could moan to her and get it out as I’m one of those people that needs to talk,” says Anna.

Andy is self-employed so when he was helping with trips to the hospital he lost out on income so Jayne’s transport support has made a huge difference to the family. It also means he knows that Anna and Harvey are safe and won’t be any more stressed that they have to be. Jayne also spends time with Anna talking through any concerns and issues.

“The practical support was so helpful. You can’t underestimate how stressful the day can be. After waiting all day for treatment, Harvey would be feeling poorly so the whole day was exhausting. Without Rainbow Trust, “we would have got through but it would have so much more stressful,” says Anna. Anna said, “You can’t take the [Rainbow Trust’s] support for granted. I find it hard to ask for help but Jayne has been brilliant and a huge help.”

Feb 18, 2016

Zia's Story

Supporting sick babies in hospital
Supporting sick babies in hospital

Zia was born 10 weeks early and weighed just 2.3lbs. She was admitted to her local neonatal unit and put on a ventilator for oxygen support. She had six blood transfusions, chronic lung disease and was later diagnosed with a hole in her heart as well as having a genetic disorder.

“In the neonatal unit, it’s like being in a bubble. That’s all there is,” remembers Dawn, her mum. “It felt safe but the thought of bringing her home scared me.” She and Matt, her partner, also have a 9 year old son, Rhys.

Dawn referred herself to Rainbow Trust for support. She knew she needed help so contacted the Rainbow Trust Cumbria office. Marlene, one of our Family Support Workers, visited the family at their home to talk about how she could help.

Dawn struggled to bond with Zia at first as she was so ill and she didn’t feel confident taking care of her. Marlene spent time with Zia in the neonatal unit and supported Dawn emotionally. This gave her the space to talk about her fears and helped her find her confidence to look after Zia. “I found it so hard, I wanted to put Zia into care as I didn’t think I could cope. Having Marlene there for emotional support made all the difference,” says Dawn. “I can’t put into words how much she has helped me.”

Zia spent five long months on the neonatal ward and when she was discharged, Marlene drove Dawn and Zia home so that Matt could collect Rhys from school as normal.

Marlene also takes Dawn and Zia to the team’s drop in group, where Dawn has met other families in similar situations and which gives her a chance to talk about what she’s going through with people who will understand.

“I don’t know where I’d be without Rainbow Trust and Marlene. If I need help, I know I can call them. Marlene has been brilliant,” says Dawn.

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