Hope House – Esmay’s Story

Esmay’s mum and dad don’t know what the future holds for their ‘little warrior’ daughter, so they are determined to pack every day with fun and laughter to build precious memories to treasure.

“With Esmay’s diagnosis and her complex condition anything can happen,” says Kim. “She’s partially deaf, she can barely see in one eye and she needs more operations on her heart, but she’s always got a smile on her face even when she is feeling really poorly.

“She’s only just learning to walk, which we never thought she’d be able to do, and she shouldn’t be able to talk but she’s trying and can already say a few words such as Mum and Dad and No!

“But it’s seeing her three brothers and three sisters and her Nanny Parry that really makes her face light up. They all love the bones of her and Esmay is the little warrior of our family. She’s the youngest but she’s the boss!”

Kim and Richard discovered that Esmay had a heart problem even before she was born. After a scan at 21 weeks they faced a heart-breaking decision when they were told that their unborn baby was unlikely to survive birth. They were asked whether they wanted to continue with the pregnancy.

“We’d felt her kicking and we wanted her to have a chance at life so we put our foot down and said no,” says Kim. “Luckily Sian, the Neonatal Nurse from Hope House, was in the hospital to see someone else and was at the meeting so she supported us. She was amazing and really on our side.

“She helped us and told us all about what Hope House could do to support us, whatever the future held. I was scared because I could already feel Esmay moving and the thought of coming to a hospice blew my mind.”

For Richard the situation was particularly poignant. His daughter Mia had also been born with a life-threatening condition and received respite care from Hope House before she passed away here in 2018.

“I sat Kim down and we talked a lot about my experience of Hope House and all the care and support Mia had received. In a strange way it was very comforting because together we knew what help was available and that it would be a massive support system for the whole family,” he explains.

Esmay was born by caesarean section to avoid putting a strain on her heart and taken straight to the hospital’s special care baby unit before being transferred to Alder Hey Children’s Hospital the next day. At just 11 days old she had open heart surgery.

Richard recalls: “The surgeon told us after the operation that if we had waited another day it would have been too late. We would have lost her. After the operation they had to leave her chest open and we could actually see her heart beating. It was surreal.

“It was at that stage that we also discovered Esmay had a hole in her heart and she was diagnosed with a rare chromosome disorder, and an eye syndrome which means she will eventually go blind.”

With Esmay recovering from such a major operation, Hope House was able to offer the family step down care to bridge the gap between hospital and returning home.

“It would have been scary being at home because you couldn’t pick her up like a normal baby and we didn’t want to hurt her. We came to stay and the nurses were just brilliant. They showed us how to tube feed her properly and how to care for her really complex needs,” says Kim.

Now Esme is nearly three, Kim and Richard trust our nurses so completely that when she visits for respite care they often take the opportunity to spend time with their other children.

“Looking after Esmay is a full-time role for us both so we know they can feel a little bit left out,” says Kim. “Knowing Esmay is so well looked after at Hope House means we can focus on the rest of our children and do things other families take for granted like going bowling, or out for food, or just to the park having mum and dad time.”

In fact our nurses are so much part of their family, that when Kim and Richard got married they played a special part in their wedding, helping to look after Esmay before and during the big day and dressing her in her special bridesmaid’s outfit.

Kim recalls with the biggest smile: “The nurses had decorated Esmay’s wheelchair pram with ribbons, bows and flowers to match her dress. She looked so beautiful that we just cried. We all had such a wonderful day with everyone wanting to be photographed with Esmay.

“Hope House really did go that extra mile to make the day so special for us all. All the staff are like family to us now.  They’ve been there for us since day one – the care and the help has never stopped.”

Richard agrees: “Hope House welcomed us with open arms and accept us unconditionally. They never get fed up of us phoning up and asking for advice and help.

“You never know what is around the corner. We are determined to make the most of every moment, making as many happy memories as possible for the future. Hope House helps us to make the most of every day and we really don’t know what we would do without them.”

Please help local children like Esmay to live their best life by making a donation to hopehouse.org.uk/esmay or buying tickets for our Winter raffle.