Looking after a severely disabled daughter wasn’t what new mother Louise expected but she found hope, help and friends.

The arrival of a second child was daunting but they’re a family. Jamie Bowman reports....

WATCHING her girls enjoying a parents and tots group at Claire House Children's Hospice, Louise Cracknell can't help but smile at the special sibling bond they share.

"It's those wonderful moments I treasure," says the 40-year-old from Chester. "Of course, being a mum to a toddler and a new baby is not without its challenges.

"But while many mums have sleepless nights thinking about how a second child will change the family dynamics, I had different concerns when I was expecting again."

Louise's eldest daughter, Lillian was just four-months-old when she was diagnosed with infantile spasms (a type of epilepsy, also known as West syndrome).

"Our lives turned upside down," says Louise, a former category manager in the meat industry. "After three previous miscarriages, Lillian was our longed-for baby. But when she was about 12-weeks-old I noticed things weren't right. She wasn't moving her hands as I expected her to and she was having spasms which we initially thought were wind.

"You go from thinking you've got a very healthy baby, to them saying her brain isn't as it should be. We didn't know what was going to happen, so we still had hope for her. And because things change, and different things become available, I tried to look on the positive side. Whereas I think it hit my husband Andrew hard at the beginning."

After Lillian was diagnosed, a neurologist at Alder Hey Children's Hospital in Liverpool, alongside a paediatrician at the Countess of Chester Hospital, told the family about Claire House, a children's hospice with sites in Liverpool and the Wirral which helps seriously and terminally ill children, and where Lillian first visited for the fortnightly parent and tots group.

She was offered hydro physiotherapy sessions and Louise had reflexology. The family also benefited from having a play therapist visit their home to offer ideas to stimulate and play with Lillian.

"She loves being in the water and she loves the lights," says Louise. "She gets a lot from the parents and tots group, she loves the music and the singing.

"It's all the things you want to do with your child, but you are in an environment where you feel comfortable. I took Lillian to lots of different classes when she was little, but I started to feel we weren't getting anything out of them. So, we started accessing other groups through a network of other mums and that became our social circle. Claire House kicked that all off for us.

"The fact you are with all these other mums in absolutely the same situation as you, if not worse in some cases, is wonderful. It's nice to feel normal and talk about services you can access and what things are out there for you. When I started Lillian was still very little, I was at the start of this journey and I didn't have a clue. Where do you start with having a child who is disabled? But other mums could talk about what we could access, which was hugely helpful. You just don't realise this world exists."

Louise says while her and husband Andrew, 51, always wanted more children together, she wondered how she would cope with a baby alongside Lillian.

She says: "A lot of my concerns were about how I would factor in a newborn, but Claire House suggested ways they could help. They told me it would just happen and I'd work around it. It's just dealing with the unknown.

"If someone had told me I'd have had Lillian before I had her, I'd have thought how would I cope. But you have no choice and you do it. And it's the same when another one comes along. I'm in it now and we're all here and we are surviving."

"It is difficult. If you had a child without a disability, they would be able to do things for themselves. I worried about how I would feed them at the same time. But you just become amazing at multi-tasking!"

Louise and Andrew welcomed their new baby, Evie, in November 2018, and Claire House has proved a crucial lifeline for the couple.

"As the carer of Lillian, it was daunting to think how I would cope with another little person's needs to juggle," says Louise. "So, while Evie was very much wanted, I worried about how our first born would be affected because she too was entirely dependent on me. Then came the other fear, would this baby have the same disability as her sister?"

Louise was monitored closely at hospital during her pregnancy with Evie and she had MRI scans during pregnancy to see if all the parts of Evie's brain were developing as they should. Louise also closely monitored Evie for any signs of infantile spasms. She says: "I look at Evie and watched her moves even more closely when she turned 12-weeks-old, because infantile spasms usually start around the three-month mark."

Louise says if she is having a bad day or a good day the Claire House team are at the end of the phone to offer support. Louise says: "While it is about Lillian, the team at Claire House make it very much about the carer as well. They make sure I'm looked after too because they realise if I'm not well, nothing happens."

"It is wonderful we've got a baby here that, fingers crossed, is doing everything she should be doing. It's obviously very different to the experience I had with Lillian.

"It's lovely to be given the opportunity to be a mum to a child that, fingers crossed, doesn't have the needs that Lillian has. But I don't have any time for myself, it's 24/7 and you think 'When does it actually stop?'.

"When people have children there is always an end date," she adds. "At some point the children grow up and, while they will always need being taken care of, that dependency lessens as the years go on. Whereas I look at Lillian and think my job is never going to stop with her, so it's bittersweet."

Claire House have taken the pressure off by offering practical advice and providing respite care for Lillian, meaning Louise and Andrew, who is chief executive for food company Tulip, have not had to worry when Louise was in hospital having Evie.

"Second time around, I've loved doing all the 'normal' things a new mum gets to do, but it's full on," she says. "Having two children is stressful enough, but the fact both girls are dependent on me makes it even more difficult. That's why it's amazing to know Claire House will help in any way they can."

Lillian's condition has progressed to early onset epilepsy encephalopathy - one of the most severe early onset epilepsies. Yet despite not being able to walk or move her arms, she can communicate and interacts with Evie and her older siblings, Andrew's children from a previous relationship, Maddie, 16, and Eddie, 14.

"It is sad Lillian and Evie won't have the same relationship I have with my two sisters, but they have their own special bond and are lovely and calm together," says Louise. "Lillian is very placid and takes everything in her stride. We think having a sister close to her in age will help her develop too."

Louise is now looking forward to her first Mother's Day with both girls and hopes husband Andrew will plan a nice surprise.

"Three months on, their smiles make it all worthwhile," she adds. "I've got little Evie who beams when she wakes up and Lillian smiles because we play with her favourite toys or make funny sounds.

"Thanks to Claire House, there's even more laughter. And I can look forward to my first Mother's Day as a mum-of-two. I'm not sure what I'll be doing to mark the occasion yet, but I know it will be a wonderful day."

You can help Claire House to support mums, dads and their children this Mother's Day by visiting www.claire-house.org.uk.