Help Families with a Sick Newborn Baby in Hospital

Having a child with a terminal or life threatening illness is difficult for any family. For most families, parents and friends can help out by giving them a much-needed break or some moral support.

But nobody wanted to look after Vicky and Rick’s sick child.

Vicky’s 22 week scan showed a dark shadow on her unborn baby’s heart. Tests revealed that the baby had heart defects and that he may not even survive birth. After a tense delivery, Samuel was born. He underwent his first open heart surgery at just four days old and his second at four months old.

Samuel's heart conditions mean that he has to be under constant supervision. For this reason, Vicky and Rick have had no time alone together since Samuel was born. None of their friends want to look after him as they are so afraid that something will happen to him while they are away. Friends and family offer to help with the other two children but no one is comfortable taking on the responsibility of looking after Samuel. His health is so fragile and this has meant that the couple are constantly under pressure to keep him calm and healthy.

Rainbow Trust Family Support Worker Sarah now supports Vicky and Rick at home, where she can watch Samuel and give Vicky time with her two daughters, Daisy and Betsy. Sarah stays all day, which is the only break that Vicky has.

“Without Sarah, I’d have no kind of break at all,” says Vicky. Samuel can be up in the night up to 25 times so having Sarah there in the daytime means that Vicky can relax just a little bit during that time.  Having that extra support makes a huge difference to the family’s exhausting routine.

The reality is that without Rainbow Trust, Vicky and Rick’s family would have little or no respite from the constant anguish of keeping their son alive. Sarah’s support gives the family a chance at normal, something that every family we work with desperately cherishes. Thank you for supporting Vicky and Rick through this project.

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