Rachel's road to recovery
“The day after Rachel was born the doctors knew that something wasn’t right. She had to be rushed to neonatal for scans. Luckily we had time to get her by ambulance from Cork to Crumlin. When she arrived they were waiting for her with an incubator. We followed the ambulance and arrived at Nazareth ward at 1am in the morning. We didn’t know where we were or what was going on, to be honest! We stayed there for 21 nights in a row for Rachel's first surgery.
She needed everything checked because her condition can affect the brain, heart, lungs, kidneys and spine, and there could have been complications. She was very distressed over the weekend and the surgeons decided that she needed surgery to give her a colostomy bag. She was nine days old. We were completely in shock. We had never heard of the diagnosis or medical complications they were talking about, yet alone thought our baby would have these conditions!
We thought we’d never get her home. She has a big brother, James, who was nearly three at the time. We had ongoing support from the staff with follow up appointments in Crumlin. They were there for her and for us. They were always there. They were amazing. We trusted them completely. For each surgery she was on at least three painkillers and three antibiotics. She’s had three major bowel surgeries in total. We have constant contact with Crumlin.
Now, she’s on the road to recovery. She’s overcome the hurdles, like the big surgeries. She’s still smiling through it all. My sister and I ran the Cork ladies mini marathon last year and we raised over 2,000 euro for CMRF Crumlin. It was our little way of giving back. It was a hugely emotional journey. It was exhausting but so rewarding.
If I had to say one thing to the staff at CMRF it's that they were amazing when we needed it most. We can never thank them enough. Because of the support CMRF gave to the hospital, the hospital were in turn able to give us amazing support. They created a whole new bowel system for Rachel and improved her quality of life. How do you thank someone who helps you through your toughest time, when you’re completely lost and devastated? We are overwhelmed with the care we got, when our world was turned upside down. The staff in the hospital treated her like she was their own. They made us feel so important. They spoke to us like we were the centre of attention and Rachel was always their priority. The nurses and surgical team came into the room, sat us down, explained everything to us, but they always spoke to Rachel too. They’d say ‘good morning Rachel, how are you today?’ She was never just a number on a chart for the staff. She was never just work to them. She was a valued person and they genuinely cared about her, her welfare, her quality of life, and that she got better. We never thought we would be in the situation we were, but we were so grateful for the supports from CMRF when we needed it most.
Last Monday, the 5th March, Rachel celebrated her first birthday! It was such an emotional experience, and a moment for us to look back and reflect on what an extraordinary year it’s been. It was so, so difficult at times and so, so stressful as parents. We hope no parent has to go through what we have been through. Ever. It's only through times of extreme adversity that you realise what is important in life. We would have given anything to be a normal family of four at home. We have two beautiful children. They’re our world. As a parent, you’d do anything to protect or help your children. We're so grateful that CMRF Crumlin was there to support Rachel and allow us to return home as a family.”
- Niamh Lee, Rachel Lee’s mother, 7th March 2018.