We’ve been lucky enough to benefit from The Sick Children’s Trust’s support on two occasions, and my guess is that we may need them again in the future. Our daughter Jessie was born with only one lung – something we knew about from her 20 week scan. Doctors prepared us with the news that this could bring an increased risk of infection. What we didn’t know until later, was that she also had a narrowed trachea (called tracheal stenosis), and this has proved to have a far greater impact than her having one lung. Jessie has been in and out of hospital for most of her life, but has had two significant stays, both of which have had a major impact on the whole family. But thanks to The Sick Children’s Trust we were able to get through it together.
In the summer of 2013, Jessie spent two months in Addenbrooke’s hospital due to prolonged periods of infection. It was at this point that her tracheal stenosis was diagnosed, which meant she had to start using a ventilator at night and she was primarily fed through a tube. This was initially via a nasogastric-tube and ultimately via a PEG, which is a tube directly into her stomach. Once the feeding and ventilator support was in place, the team began working towards getting Jessie home. This required them to get us comfortable with how to use the new equipment which was helping to keep her alive.
We were offered a room at The Sick Children’s Trust’s Acorn House – this allowed us to spend our first night together as a family for nearly two months. For Jessie, it was a chance to get out of the ward, and play with toys in a normal home environment. For us, it provided the opportunity to check we were able to manage her ventilation and feeding in a comfortable, calm environment, with the doctors and nurses close by in case anything went wrong. Luckily, everything was fine, and we all went home safely a few days later.
Towards the end of 2014, it became clear that Jessie’s stenosis wasn’t going to resolve itself naturally, and that she would need an operation to correct it. This is a relatively rare condition in its own right, but more so when coupled with an absent lung. Great Ormond Street Hospital (GOSH) have pioneered an operation called a ‘slide tracheoplasty’, which allows them to widen the airway, and hopefully give children like Jessie a normal life. The recovery is often long, but the alternative is far worse.
Jessie went into GOSH at the end of March 2015 for her ‘slide’. The operation went very well and we were told she could be home in two weeks. Unfortunately there were a few complications as a consequence of her rare combination of abnormalities, and in the end she spent two months in intensive care and nearly three months in total at GOSH, before being transferred back to Addenbrooke’s for her final recovery.
The Sick Children’s Trust came to our rescue again, providing us with a room in Rainbow House. The house is only a few minutes’ walk from GOSH, which meant we knew we could get there quickly if anything went wrong. The ward could also call us in our room if there was an emergency – luckily they never needed to do so. Jessie didn’t stay with us on this occasion, but we were lucky enough to meet other parents staying in the house over the time we were there. I think it’s safe to say that this is a twin-edged sword - it’s lovely to be able to talk to parents who understand exactly how you feel and vice versa - the sad part is realising that other parents and children are often having a much more difficult time.
For us and all these parents, The Sick Children’s Trust is a real support and comfort. They provide an essential ‘Home from Home’ for families who would otherwise have to travel long distances on a daily basis, or find expensive accommodation near to the hospital.