Big Hour Campaign brings Hope

Rainbow Trust’s Big Hour Campaign is a nationwide challenge that calls on people to make the most of their extra hour to support families with life threatened or terminally ill children.

The Big Hour recognises how important an hour of support can be to a family who has a seriously ill child. An hour of support from a Rainbow Trust Family Support Worker can make all the difference to a family who are having to face the prospect that their child might not get better.

Hampshire mum Leanne Dempsey says she and her partner Dean Ridley could not have coped without the charity's help after their daughter Hope, now aged four, was born with a severe heart defect.

The couple, who also have a son, Tyler aged six, were looking forward to their 20 week antenatal routine scan after losing three other babies in early pregnancy, only to receive devastating news.

Leanne said: "I'd had a couple of miscarriages before Tyler was born and so when we got to 20 weeks I breathed a sigh of relief and we were so excited and looking forward to the scan thinking everything would be alright. When they said something was wrong I was really shocked."

A second scan two days later at the Foetal Medicine Unit in Princess Anne Hospital confirmed their fears.

"Dean and I were told our baby girl had a heart defect. Doctors told us it was so severe her chances of surviving the pregnancy were not good and if she did survive, she probably wouldn’t live for very long. There was a surgery the doctors could do that could help if she did survive but that had its risks too.

We were offered a termination and obviously we declined because we didn't want to make that decision. I said whatever happens will happen . We decided to let nature take its course and give our little girl the chance to fight. "

Doctors offered Leanne, 43, amniocentesis - a prenatal test to check for any chromosomal abnormalities which carries a slight risk of miscarriage, but she declined.

"I said I don't actually care what's wrong with her. I love her no matter what."

Son Tyler had had a twin that died in the womb and Leanne had two other miscarriages at 13 weeks.

"I think losing those babies made me stronger. No matter what, having lost three babies, it made me more determined. As long as her little heart was beating I would fight for her.

"I was scanned every other week to check how her little heart was developing. Every time they said she was growing ok and doing alright but it could change. I didn't know if she would make it to birth.

"We didn't even go out and buy any clothes or get anything in: we were just too scared; it would have been like tempting fate. If we did lose her it would be too difficult to have those things. Only a few days before they induced me I bought a few baby grows. Against the odds, she survived and that’s why we called her Hope."

Just a few hours after being born Hope was whisked away for heart surgery to try and repair her damaged heart. Hope has Ebstein Anomaly. The right side of her heart is severely deformed so the left side of her heart has to work twice as hard to keep pumping oxygenated blood around her body. Her lungs collapsed and got flooded with blood. She was in intensive care for a few weeks.

"We were told she would be in the hospital for weeks or months on end but our little trouper defied all expectations. After three weeks in intensive care she came home after another two weeks in hospital. She's very feisty and I think that stood her in good stead! She knows what she wants and is very strong willed, and I think she even scares her older brother! But he's very protective of her and keeps an eye on her at school."

Leanne's parents live in South Africa so when she was in hospital two-year-old Tyler had to stay with Dean’s parents.

The Rainbow Trust stepped in to help once Leanne got home who felt terrified not having the round the clock hands-on help of doctors and nurses.

"When we got home from the hospital we had to watch Hope constantly, we still do. Because of her condition, we have to make sure she is getting enough food to keep her heart going. As a baby she didn’t want to drink her milk so I’d spend hours just trying to get her to drink it and then she’d so often throw up what she had drunk so it was a constant battle.

A friend of mine visited and told me about a charity which was helping them with their poorly child so I started researching some support for us. I could see that Tyler was not getting the attention he deserved and I felt so guilty. He had been the only child in our lives and now there was this baby and I wasn’t able to spend as much time with him as I’d like.

I found Rainbow Trust Children's Charity - they came to assess us and Eleanor started supporting us when Hope was two or three months old. She’s been just brilliant. I don’t drive so Dean, a former Avionics Engineer and now Production Supervisor, had had to take time off work to take us to the hospital. Eleanor was able to take us to Hope’s hospital appointments and played with Tyler in the playroom while I was in with the doctors or consultants. Eleanor and Tyler just clicked when they met and I could see that Hope was very comfortable with her too.

When we were home, Eleanor helped me with Hope, feeding her when Tyler needed me or playing with Tyler when Hope had appointments. We got into a really comfortable routine which worked so well.

It’s such a relief knowing there is someone there to turn to who really does understand. People who don’t have a poorly child do not understand what it is like for us on a daily basis. We have to watch Hope constantly to make sure she rests when she needs to and has enough snacks to get her through the day.

"When she gets tired or her energy levels drop, her heart has to work even harder. When this happens, the blood in her body is pumped to the vital organs to keep them working so her lips, hands and feet can go blue and she becomes breathless and feels very cold. These ‘blue episodes’ are very scary and if they go on for too long, we have to take her straight into the hospital for treatment.

Eleanor has been with us for so long now that she can see the signs too and she is the only person I am happy to leave both my children with as I trust her.

At night Dean and I have to constantly check on both children - Tyler is asthmatic and wheezes at night so we have to keep an eye on him too so we don’t get much restful sleep. When Eleanor takes the children out, I take a break and on many occasions, I have climbed into bed and slept. I know when the children are with Eleanor, they are safe. If I don’t sleep, I catch up on phone calls and housework that I can’t do when I have to look after both children.

Having to watch Hope constantly is exhausting but with Eleanor’s help, I honestly feel like all the stress falls away and I breathe a sigh of relief. Knowing that Hope’s health is so precarious, we live in the moment and we don’t take anything for granted.

" Over the summer, I didn’t see many of my friends as I just wanted to spend quality time with my children. We don’t know if Hope will be in hospital next summer or if this Christmas will be her last. I want to cherish every moment I have with my children.

Eleanor helps us do this too – she gives me time to spend with Hope on her own and I get to spend time with Tyler on his own. This is so precious to both Dean and I, and the children. Tyler still needs that one to one attention from an adult and Eleanor allows us to give him that time.

Eleanor looks after all of us. She can chat to all of us and the children love her. I can talk to Eleanor about anything and everything and I do. I don’t know what I’d do without her. "

Hope was able to start school in September and so far things are going well.

"In the next couple of years she will need heart surgery to try and repair her heart but it has its risks. For now, Eleanor helps us give Hope a great quality of life and while she has that, we are happy.

I don’t know what we’d do without Eleanor, she has become a very special part of our lives and I know I can call on her to help whenever she can. We couldn’t do this without Eleanor or Rainbow Trust and I have and will recommend Rainbow Trust to others in similar situations.

More people should know about them, they are just brilliant. Eleanor helps us with what we need and I trust her with my precious children and I can’t say that about many people.

Leanne is now able to work part-time for Barclays as a Community Banker, as she is just minutes away from the school, and can still call on Eleanor for help at any time.

*Help Rainbow Trust reach more families by using your extra hour to fundraise in any way you like; an hour-long bake sale, quiz, sponsored silence, a lunch-time event, coffee-break – whatever works for you! Visit rainbowtrust.org.uk/big-hour for more great ideas.

Just £24 will fund an hour of support for a family caring for a seriously ill child.

Sign up today at thebighour.org.uk