£30 can make the biggest difference to a family like ours
Adam and I were in the car on our way to Essex at 7am for a triathlon that he was competing in when my waters broke in the car. I was 28 weeks pregnant at the time and our precious daughter fought a vital battle to stay inside my tummy for five extra weeks. Every day that she stayed in was a bonus as it meant she would be stronger when she was born to fight everything she was about to face.
It wasn’t until after Georgia was born, when the doctors tried to intubate her, that she was diagnosed with a condition called Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA). This meant she was unable to swallow and Adam was told that she needed an urgent operation and she could be in hospital for months. While Adam was dealt this blow, I was in surgery as I had lost 30% of my blood while giving birth and need a double blood transfusion. When I woke up, Adam was as white as a sheet and told me about our daughter. We were both devastated. Before Georgia was transferred to the Royal London Hospital in Whitechapel, the midwives wheeled me to see her in special care. Up until this point, I’d only had a quick glimpse at her as she was urgently moved to special care for extra support as she was so premature. It meant a lot to me that I could see her properly before she was transferred. Adam went with Georgia to London and I was left at our local hospital in disbelief and shock.
Fortunately at midnight my midwife told me I was being transferred to the Royal London as well. I passed the Neonatal Intensive Care Unit (NICU) when I arrived and at 4am and I wandered around the hospital to find my daughter. I walked into the right unit, her unit. I don’t know how I found her, it must have been intuition, but it broke my heart to see something so tiny full of wires and breathing support. The nurses were amazing though and explained what was happening.
At just a day old, Georgia had surgery to detach her oesophagus from her windpipe and then stretch it to attach it to her stomach, closing the 1cm gap. For three weeks, Georgia remained in NICU and for all that time we were housed by The Sick Children’s Trust which made the days and nights so much easier. I could not have comprehended dealing with a long commute home each day when I had no sleep whilst also trying to express milk every 2-3 hours. It just wouldn’t have been feasible.
We didn’t feel guilty when we left Georgia in hospital because we were so close to her at Stevenson House. Speaking to other parents on the ward who didn’t have a place to stay made us realise just how close we were because we had a ‘Home from Home’. We could come and go from Georgia’s bedside all day and all night as we were just a short walk from the ward. Adam could go and have a sleep during the day, and I could go back to the house and express in private. Or together we could have some food and watch telly for an hour. It allowed us to recoup and reset. Some days we felt fine and strong, but others we could cry all day and needed that space away to do that.
Stevenson House was important to me as without it I don’t think my breastfeeding journey would’ve happened. I had to express throughout the night and there were breast pumps available at the house which meant I could do this away from the hospital. Without that I am pretty sure I would not have been able to continue my breastfeeding journey and if we’d been at home, it really wouldn’t have been possible.
Three weeks after her surgery, we were starting to look forward to being discharged home. However doctors discovered that a bleed on her brain, which she had when she was born, had caused hydrocephalus. They liaised with the neurologists at Great Ormond Street Hospital (GOSH) and under their guidance performed two lumbar punctures to try and release the fluid on Georgia’s brain. Unfortunately, a few days later we were informed that these procedures had not been successful in reducing the fluid and Georgia would need to be moved to GOSH.
When we were at GOSH, I was in a room with Georgia but there were a few nights where Adam was housed in another one of The Sick Children’s Trust’s ‘Homes from Home’ which was a comfort. At GOSH, Georgia had a shunt fitted to drain the excess fluid in her brain which is absorbed and processed by her body. She’ll have this shunt for life. It’s a bizarre situation as with her conditions there isn’t a ‘one fix all’ procedure. They are both lifelong and she will need monitoring in case of any complications.
Georgia is eight months old now and is babbling away, rolling over and is such a smiley baby. Despite doing really well, she is susceptible to any respiratory illness, in her short life she has had already multiple hospital admissions with bronchiolitis, so right now we are taking even more extra precautions. This girl is a pro at self-isolation and continues to be a strong-willed little character and we know she had a lot of fight in her for whatever comes her way. We met a little boy at Stevenson House, who had come back to visit with his parents. We found out that he was born with TOF/OA and it was amazing to see how well he was doing. We needed to see that.
Without the opportunity to stay at Stevenson House I believe our journey would have been even more challenging. It costs the charity £30 to support a family for one night, that £30 can make the biggest difference. £30 sounds like a lot but you can go out for dinner once a month and it will cost more than that. In times like these, I would encourage others to think about spending that money elsewhere and giving the gift of a night’s accommodation. Sometimes people think they have to give big amounts to charity, but the little bits add up. Even the loose change in your pocket.
When we are able to we will be rearranging my parents Golden Wedding anniversary party and Georgia’s christening which were both going to raise money for The Sick Children’s Trust because without the charity’s help we would’ve found the situation a lot more difficult.
It costs The Sick Children’s Trust £40 to support a family for one night. £40 gives a family so much more than just a roof over their heads when their child is in hospital. £40 gives them someone to talk to, and a calm place to rest with their family.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.