THE parents of a little girl who lost a lifelong battle against a rare heart condition are starting a hospital library in her name to give the gift of reading to other children forced to spend time in hospital.
Rose O’Leary-Hall died in September aged just four following a series of surgeries and treatments for the ultra-rare condition Interrupted Aortic Arch, which she was born with and which affects only one in 50,000 babies.
Her parents Sue and Katie, of Pool-in-Wharfedale, said that Rose loved books and being read to, and that her favourite stories made her many stays in hospital more bearable.
They wanted to give something back to the Paediatric Intensive Care Unit in Leeds that had cared for Rose, and hit on the idea of the best Christmas present - the gift of reading for other children.
So now they have instituted Rose’s Library at the PICU, and are asking for people to make donations of their favourite children’s books for other youngsters to enjoy while in hospital stays.
Sue said: “A book is an escape, a chance to go into a different world for a short while, and it not only takes the child’s mind off being in hospital, it’s an escape for the parents as well, to spend a short time reading with their child.”
After announcing the idea, Katie and Sue have been inundated with physical copies of books from friends and supporters and their home is packed with piles of treasured children’s classics.
However, they have now switched to asking people to donate money to buy audio books which can be listened to on the PICU’s stock of tablets.
Sue explained that there were issues around infection control with physical books - obviously many of the children being treated are at risk of picking up infections and a physical library of books could cause issues for the staff to clean properly between children reading them.
So now the hard copies of books that have been received will be put into age-appropriate packages for children staying on the wards to take home and keep, branded “A gift from Rose’s library”.
Going forward, Katie and Sue have teamed up with the Children’s Heart Surgery Fund to provide audio books which children on the ward can listen to, selected from a growing list under the banner of Rose’s Library.
Sue said: “People can make a cash donation and request a specific book that be bought, perhaps one of their own favourites or one that their children love. Or they can just make a donation and the books will be selected for them.”
To help stock Rose’s Library, go to www.chsf.org.uk/donate-form/ and tick the amount you want to donate, then in the comments box add the names of the books you would like Rose’s Library to stock for you.
Katie added: “Rose loved stories and we know so many other children do, and it was one of the things that just took her mind off being in hospital for a short while. We hope that Rose’s Library will do the same for so many other children who have to stay in hospital. Rose would have loved the thought of it.”
Rose needed a biventricular repair to fully tackle the damage to her heart caused by the condition, but as a newborn baby she was too small and her heart too fragile for such an invasive operation.
Instead, at three days old, Rose underwent an operation known as the Norwood Procedure followed by 17 days fighting for her life. At ten months old, Rose had to have another operation, though her heart was still not strong enough for the much-needed biventricular procedure, and though she suffered a stroke which caused paralysis down her left side she once again confounded everyone with her fighting spirit that allowed her to pull through.
In August this year, Rose was finally deemed strong enough for the operation she needed. Although the 14-hour operation was initially a success, surgeons found she had no electrical impulses in her heart, and she underwent yet more operations, including the fitting of a pacemaker.
But four days after the initially-successful operation Rose’s heart began to bleed, and though surgeons fought valiantly to repair the damage, more holes kept opening up. Then Rose’s kidneys failed and she was kept on life support, and was opening her eyes and responding to voices. But on Sunday September 3, it was decided no more could be done for Rose, and on Monday the machines were turned off.
Her parents, who have a son, Will, now hope that Rose’s legacy will be the hospital library in her name that will help children and parents going through similar traumatic situations.
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