Evelyn

For Evelyn and her parents, Danielle and Chris, Rainbows is a place where they can feel like a “normal” family amidst endless hospital appointments and medications.

In a world that was turned upside down at Danielle’s 20-week scan, Rainbows means happiness, a place they can make memories and have quality family time.

“We had already had three miscarriages and then at the scan for Evelyn, they couldn’t see all four chambers of her heart,” said Danielle. “We had so many scans, they kept changing her diagnosis, and then she was born, we were told us it was hypoplastic left heart syndrome, which means the left side was underdeveloped and severely impacting its ability to pump blood effectively.

“I was heartbroken, but all the tests had prepared me for the worst. Chris had tried to remain positive so when the final diagnosis came, it was a huge blow.”

Within the first six-months of her life, Evelyn had two surgeries. Each one was traumatic. After Evelyn’s first surgery at 11-days-old she struggled to breathe without a ventilator and her chest had to be left open as her heart was swollen.

“The Chaplain came days before her first operation and christened her,” said Danielle. “It was terrifying. I look back on pictures and I think of how we felt then, and it is harrowing.”

Evelyn had more scans, more echocardiograms, more tests and more x-rays. Over and over, Rainbows was discussed.

“We knew we would be destined for a different pathway and that pathway was going to involve Rainbows,” said Danielle. “We learnt a lot about Rainbows from the start of our journey from the Pre-natal Nurses who helped prepare us for the diagnosis, to the Rainbows Nurse in hospital that came to visit after Evelyn’s first surgery.”

When Evelyn was well enough to leave hospital, the family attended our Baby Group.

“It is just wonderful,” said Danielle. “We were instantly welcomed, and I knew it was going to be a group that we would love being part of. A lot of little ones there were babies with heart conditions. Meeting other parents in the same situation was great for us to gain more knowledge and nice to see how others cope. It was so reassuring to see and very uplifting to have that support in our lives.”

Danielle and Chris have accepted there will be limitations because of Evelyn’s condition. They were worried she would never be able to swim in a normal pool. But at our hospice, that is possible. She can splash around in the Hydrotherapy Pool having the time of her life.

“We knew she would struggle with circulation and was always going to be cold,” said Danielle. “We took her swimming at Rainbows just before she was six-months-old. It was so much fun. She was so confused but she absolutely loved it. And Chris and I got so much out of it. It was a real family moment that I didn’t think we would ever get.

“Everyone was there to make it an amazing experience for us and something as simple as towels being provided, made it so much easier.

“At Rainbows, we can spend time with her as our child and not a patient in hospital. At Rainbows we can be her parents and not have to worry about medication.

“Everyone is just so nice; it is infectious, and it helps us to know that Rainbows is always there. In a scary time, they have made us feel reassured.”

Danielle, Chris and Evelyn also visited our first Community hub in Derby. These are where we take our expertise to the local area for families that struggle to get to our hospice in Loughborough.

“To have somewhere close by every so often is just amazing,” said Danielle. “Evelyn loves things like Music Therapy and massage, so to be able to benefit from those services on our doorstep is priceless. And again, it is another place where we can meet people from the local area who are in a similar situation to us.

“We know Evelyn will be vulnerable to so many things. We have to be very careful when she shows any symptoms of illness, being mindful of not only her illness but also the impact that could potentially have on her heart. She will also likely struggle with her energy levels as she grows due to having half a heart. Even eating takes energy.

“We still have at least one more operation and further procedures to go for her heart to complete her single ventricle pathway, it’s going to be a difficult road but knowing that Rainbows are always there for us, and that we will always have that support to help us through is a huge comfort. Rainbows gives us something we can look forward to with our complex journey ahead.”

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