Hope
“A little cold could mean the difference between our little girl surviving or not.”
This is reality for Claire and Richard, parents of two-year-old Hope.
Hope was born premature at 24 weeks due to an infection in the placenta. She was small but well and the family were told that she just needed to grow. But Hope developed Sepsis several times during her stay in Neonatal Intensive Care Unit.
Unfortunately, when Hope was seven-weeks old, doctors discovered she had Necrotizing
Enterocolitis (NEC), a serious gastrointestinal problem that mostly affects premature babies. At 10-weeks-old Hope needed surgery to treat the NEC but she had a cardiac arrest during the surgery because her oxygen levels were too low. Tragically, this caused brain injury.
“She was so unstable, a surgeon left her stomach open for two days after surgery as she was too unstable to continue operating,” said Claire. “It was a really traumatic period and such a scary time. We were told to prepare to say goodbye to Hope. But then her suction machine was turned off and she started to recover.”
When Hope was four-months-old, it was discovered she had Pulmonary Hypertension – a condition that affects the blood vessels in the lungs; and Patent Ductus Arteriosus (PDA) – a heart defect that can develop soon after birth and affects the way blood flows through a baby’s lungs.
“We just kept getting told she wasn’t going to live,” said Claire. “But Hope overcame all the issues. She was having none of it and she fought away every threat there was for her life ending.”
Hope also has Cerebral Palsy and Dystonia, which means it’s often difficult for her parents to dress her or even change her nappy.
Just before her first birthday, Claire and Richard discovered Rainbows. Hope has siblings William (seven), Jasmine (18) and Tyler (21). Our charity has made a huge difference to the family’s lives.
Richard said: “Rainbows is somewhere we can go and do things like a normal family. We can do things like take her swimming in the Hydrotherapy Pool. Sadly, our world isn’t set up to meet the needs of a severely complex child and Rainbows is somewhere that is, and no one stares at you.
“It is also somewhere for her brother, William, to enjoy. He is one of the biggest victims in all of this. He adores his baby sister, and he is going to see her die. He needs a positive experience as much as anyone and Rainbows gives him that.
“People forget that William has lost so much. Our whole lives have been completely altered forever and it is really hard.”
Claire added: “Everything about Rainbows is wonderful. When Hope was in hospital, Rosie, the Rainbows Music Therapist, came to neonates and was singing to Hope. Everyone came around to listen and thinking about it still makes me cry; there wasn’t a dry eye in the house and everyone loved it.”
Hope’s parents say their daughter’s life is about quality not quantity and she still needs further surgery, which may help her breathe better.
“It frightens me as the atrophy may mean she loses the ability to breathe independently anyway,” said Claire. “Her resuscitation plan says if she gets an infection, and it is to do with atrophy, that is the point we will have to say goodbye.
“We got to the point where we think everything is going to be fine and then she will get a little cold, which for Hope isn’t just a little cold, it is major. A little cold could be the difference between her surviving and not. And then the implications on her being in hospital again is that it is such a shame for Will. Someone is missing from the family, you are exhausted.
“But Hope is all smiles and babbling; she is not at all what they said she would be. She is beautiful. She shouts and giggle and we know when she is happy or unhappy. She is an absolute joy.”
Rainbows is also somewhere for her brother, William, to enjoy. He is one of the biggest victims in all of this. He adores his baby sister, and he is going to see her die. He needs a positive experience as much as anyone and Rainbows gives him that.
