Taking in the fresh air to and from Rainbow House made the world of difference
This isn’t real, I thought, this is a nightmare and I will wake up from it.
I had given birth just hours before to my baby daughter, Isabelle, who had been rushed to Great Ormond Street Hospital (GOSH) in a fight for her life.
My heart sank as I was told how poorly Isabelle was. I was on my own trying to take in what was happening. Isabelle was born full term and initially seemed fine, but after a couple of hours she turned purple and was taken to the neonatal intensive care unit (NICU) and was intubated to help her breathe. She was diagnosed with meconium aspiration, which is when meconium (a baby’s faeces) is inhaled at birth. The tar gets into the lungs and causes difficulties for a baby to breathe.
Not only that, but when we arrived at GOSH it was also discovered that Isabelle had a rare heart condition called total (or partial) anomalous pulmonary venous connection (TAPVC). This is when the four veins that take oxygenated blood from the lungs to the left side of the heart aren’t connected in the usual way. Instead, they connect to the right side of the heart. Isabelle’s life was at risk.
I was in shock, and on my own with Isabelle, as my partner Shane stayed at home to look after our son Jack. I was trying to take in everything the doctors were telling me. The surgery she desperately needed was risky enough, but had more risks due to the fact that she was suffering from meconium aspiration.
Isabelle had the surgery immediately and was in a pickle for a week after a few complications. Following two weeks in intensive care, I was given more heartbreaking news. Isabelle had hydrocephalus, a condition in which a build up of fluid in the brain puts pressure on it. She needed more life-saving surgery.
I couldn’t get my head around that something this serious happening to our family. I had to stay strong, even though it was incredibly hard. Every day I spent hours by my daughter’s hospital bedside every day, and that also meant every day I was also away from Shane and two year old son, Jack, which was devastating. I had never left Jack for more than an eight hour shift, twice a week.
Luckily, Jack is a daddy’s boy which made it easier for him but I was so torn. I went to see him at the park behind the hospital on day ten whilst Isabelle was still in intensive care, but it broke my heart.
It was after Isabelle’s second stay in intensive care that I heard about The Sick Children’s Trust. The hospital told me I had a place to stay in the charity’s ‘Home from Home’ Rainbow House. It was just a few minutes’ walk away.
It was a godsend as I couldn’t have left Isabelle… she was in GOSH for three months. If it wasn’t for Rainbow House, I would have had to take out the biggest credit card to pay to stay nearby as we live over an hour from the hospital. Rainbow House was a walk away and free of charge.
One of the things that was good about Rainbow House was that it was a few minutes’ walk to get to. It encouraged me to stretch my legs, grab a coffee and take in some fresh air to and from the hospital. It felt like a little bit of away time.
At Rainbow House, you were away from the beeps and chimes of the machines and could relax whilst having your dinner. It had everything I needed and was spotlessly clean, it was like a ‘Home from Home’. I honestly don’t know what I would have done without Rainbow House. Having a place to stay is the last thing on your mind when you get rushed to hospital but it’s so, so, important and when I realised I was going to be in London for months it was a massive comfort to know it was covered. I’m incredibly grateful.
We are back home now, but Isabelle is still very poorly. She has regular appointments at GOSH, needs to be continuously tube fed and will have further procedures in the future. For now though, she’s at home and is given a lot of attention from her brother and we are pleased to be together as a family.
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
When one year old Lola Plimmer was transferred by air ambulance from Birmingham Children's Hospital to the Freeman Hospital needing a heart transplant, The Sick Children's Trust's Scott House 'Home from Home' supported mum Ella throughout her time in Newcastle
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