When our second daughter Florence was born in April 2015 with a range of complex birth defects it was the start of a difficult journey that has led to her spending countless nights at Leeds General Infirmary.
Flo arrived by emergency caesarean at our local hospital in Harrogate. Immediately, they collected a urine sample and a test revealed it contained meconium. This lead to the distressing discovery that she had no bottom (an imperforate anus) and we needed to be transferred to the specialist paediatric hospital, Leeds General Infirmary (LGI) over 22 miles from our home north of Harrogate. My husband Dickie stayed at home to look after our eldest daughter, Tilly, while I went to be with Flo.
For the next 10 days I was told by the consultants that there was something else wrong with my baby – her bladder, her kidneys, her heart, her spine, collectively known as VACTERL association. Every day when I woke up, I had to prepare myself for more bad news to come. As I was by myself a lot of the time, it was really hard to repeatedly hear that Flo was so unwell.
But I wasn’t completely alone. I had a place where I could go called Eckersley House. Eckersley House is run by The Sick Children’s Trust and is free ‘Home from Home’ accommodation supporting families who have seriously ill children undergoing hospital treatment. I was given my own room, but there’s so much more to Eckersley House.
It’s the hardest thing in the world to watch your newborn baby put to sleep under general anaesthetic. It breaks your heart to see families leaving the hospital, with smiles on their faces, carrying their babies home when your baby remains in hospital. No one, apart from those whose babies who are also fighting for their lives, could grasp the enormity of what I was feeling.
At Eckersley House there are 23 family bedrooms, which means there are others staying there who understand what you’re going through. And know what not to say. There’s no ‘you’ll be home soon’ or ‘everything will be alright’ because at times you really don’t know what might happen. I’ve made some really good friends at Eckersley House. On the hospital wards, people don’t really talk, but at Eckersley House when you’re making food, or doing laundry, families do talk to each other. You get to know one another, find out that your children have similar conditions and that you have other children who you are painfully separated from, along with your partners back home. You’re not alone. And that to me is one of the things that makes Eckersley House priceless. If you did stay in a hotel, you wouldn’t have that emotional support from other families – or the staff. Jane, Jude, Caroline and Fiona are like a little family – and we’re always welcomed into the fold.
Over the last three and a half years, I have been supported by Eckersley House on five occasions, often when Flo has to stay on the paediatric intensive care unit (PICU) where there are no beds. I try and sleep with Flo on the wards as I know that there is a huge demand to support families with seriously ill children at Eckersley House. I often hear that there is a waiting list.
Flo was in end stage renal failure leading up to the kidney transplant. It meant that we were at LGI three times a week for haemodialysis. The ultimate goal was for Flo to put on more weight and get to a size where her body would be strong enough for a kidney transplant. After countless tests on both of us it was agreed that I would be able to donate my kidney to Flo.
On 2 October the transplant took place with me in St James’ Hospital across the city from Flo in LGI. The fantastic team at both hospitals were really pleased with how the surgery went and both Flo and I are recovering slowly but well. I was unable to stay with Flo in her hospital room due to risk of infection but Eckersley House once again became my ‘Home from Home’ enabling me to recover from my own surgery while staying close to Flo. Eckersley House just makes life so much easier during a horrible time.
The future is now much brighter for our family. Flo is iron-willed and I am so proud of her strong and positive spirit. And I can’t wait to see just how much stronger she will become as she grows.
Max's family stayed with us four years ago when he was waiting eight months for a heart transplant. Since then they have inspired a huge change in the laws around organ donation in England. Read how they have been getting on since leaving Scott House
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