Helen's Story

Helen Bull, who comes to Rainbows Hospice for Children and Young People, enjoying time on a roundabout

In her little life, six-year-old Helen has had countless operations and spent months in hospital but her parents describe her as such a happy girl.

The family have been supported by our charity over the years and have missed being able to visit our hospice because of the Covid-19 crisis. 

“We have been going to Rainbows since Helen was two and we are missing it so much at the moment,” said Leigh. “I also attend various parent groups and find they are so helpful and useful. It is good to speak to other parents and I know that my Family Support Worker is always there for us.”

At birth, Helen had bleeds on her brain, a heart defect, and Tracheo-Oesophageal Fistula - when a connection doesn’t form properly between the oesophagus and trachea. She also contracted Meningitis twice. After five months, and various operations, she appeared to improve and parents Leigh and Roger were able to finally take her home.

“When she came home, Helen was having trouble with her feeds and one night I was so worried about her, I took her to A&E,” said Leigh. “She was severely dehydrated and stayed in hospital a week. While she was in hospital, she began to bleed from her mouth but no one seemed to know why. She was transferred to Birmingham Children’s Hospital but while waiting to go, she stopped breathing and had to be resuscitated, they informed me that if she had another incident she probably wouldn’t make it.”

Helen’s illness seemed a mystery but after numerous tests, medics diagnosed her with varices - veins which are enlarged or swollen, which can leak or rupture, causing the bleeding. 

“After various procedures Helen was allowed home but after three days while being put down for bed, she bled in her cot and lost a lot of blood,” said Leigh. “At A&E medics had to resuscitate her again, this time for seven minutes. It was so scary. She was admitted to PICU and spent the next seven months in hospital.”

Leigh and Roger knew Helen would need major surgery and this came when she was just nine-months-old. But after two weeks, she bled again which led to Sepsis. Eventually, Helen’s spleen, and consequently the varices, were removed.

“A number of times the hospital said she wouldn’t make it and people prayed for her. I thought she wouldn’t come through it. It was so hard. We had been told she could bleed to death at any time.

“But Helen is so happy. She absolutely loves her family; she has four older siblings. I remember her first birthday was in PICU and she was so content. 

“Helen is unable to do anything for herself, as she also has Cerebral Palsy. It is full on looking after Helen and I have to sleep in the same room as her, so when she is at Rainbows, we can have a break from caring to go on holiday or I can just get a full night’s sleep. Rainbows is such good support and when Helen is there, it gives us quality time as a family and we can do things with our two sons, who both have Down Syndrome.

“It is very scary looking in to the future but she has always been a little fighter and we know she will continue to fight. We are so thankful for the support of Rainbows.”

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