The Rainbow House is a bright idea for parents
Charity offers accommodation for mums and dads with children at Great Ormond Street
IT’S the stuff of nightmares. A life-threatening infection plunges your newborn baby boy into a critical condition. Experts at Great Ormond Street Hospital warn he will be left with permanent brain damage and ask whether the life support machine should be switched off. You are hours from home, and the ward shuts at night.
“Wild horses wouldn’t have made us leave our son,” said Kelly Grahame, 38. “As a mother, I needed to be as close to him as possible.”
The Rainbow House in Gray’s Inn Road, King’s Cross, provides much-needed sanctuary for hundreds of families like the Grahames each year.
Funded by the Sick Children Trust, it provides a home for families whose children need to be kept at Great Ormond Street long term, but cannot afford to stay in a hotel.
Baby Harrison was just four weeks old when he was suddenly taken seriously ill.
He had tested positive for Group B Strep – a bacterial infection passed on to babies during childbirth – and later diagnosed with meningitis.
Harrison was transferred into a neurological ward after further complications arose. Doctors warned that permanent brain damage was inevitable.
“After a week in the hospital we were told some news that left us having to face the decision of turning off our son’s life support,” said Ms Grahame, who lives in Essex.
“This was an incredibly stressful time for us and there were moments when we thought we’d lose him. We needed to save all our strength to get Harrison through this horrible time.
“When we heard about Rainbow House it was like our prayers had been answered. It allowed us to catch some sleep and recharge our batteries for each day, which was what we desperately needed after some of the dreadful days we had with Harrison. The house gave us a sense of normality.
“It also gave us privacy for much-needed discussions, tears and just moments of desperation that we didn’t want to share our sadness with the other families going through their own traumas.
“Coming home to the house gave us that much-needed release to really break down and have a ‘proper’ meltdown. It got me through the day knowing that I would have privacy at Rainbow House at the end of very hard days. It also kept our family unit together as we were allowed to have our other son stay with us if we wanted to.”
Strep B infects around 700 babies in this country each year. Around one in eight do not survive and most are left with future life-threatening complications.
Many women have Strep B bacteria in their system and during pregnancy it can be passed on to the child.
Baby Harrison has been allowed to return home since his ordeal began in November.
But, as anticipated, he has permanent brain damage.
His mother said she took the decision not to switch off the life support machine because she believed medical breakthroughs in the future could one day restore his faculties.
She added: “We can’t thank the Sick Children’s Trust enough for being there for us during this extremely stressful and frightening time – they made it just that little bit easier to cope.”
• The Sick Children’s Trust is at 80 Ashfield Street, E1 2BJ, 020 7791 2266 www.sickchildrenstrust.org