Going the extra mile

Alder Hey Children’s Charity is one of the fantastic charities supported in this year’s Candis Big Give. This month, we chat to Sharon Jones, 38, from Cheshire, whose daughter has been cared for at Alder Hey since she was 18 months old. She explains why the hospital is so special and how it has made a difference to her family

Nine-year-old Poppy-Mae is well- known in her hometown. “She’s such a determined and caring little girl and has been doing fundraising for Alder Hey Children’s Hospital since she was five years old,” says her mum Sharon Jones, 38. “Everyone seems to know her from the fundraising challenges she has taken on – including organising a walk from our town to Chester Zoo and climbing the stairs in our house for the equivalent distance of a walk up Snowdon. She has also been recognised at the Pride of Britain Awards and was given a 2020 Liverpool Echo Fundraising Award, which is wonderful. We’re so proud of all she is doing to help others and give back to the hospital that cares for her, especially when she is still so unwell herself.” Poppy-Mae has experienced a complex range of bowel problems since she was born.

“I was back and forth to the GP, as Poppy would cry a lot as a baby and seemed to be in extreme pain. They put it down to colic, then milk intolerance, but nothing seemed to help.”

Poppy’s GP eventually referred her to a general paediatrician at her local hospital in Chester, who contacted a surgeon at Alder Hey. “She was given a biopsy at 18 months to see if she had Hirschsprung’s disease, a rare condition where missing nerves in the intestine cause problems passing stools, but it was negative.”

“We’re so proud of all Poppy-Mae is doing to help others and give back to the hospital, especially when she is so unwell herself”

Over the next few years, Poppy-Mae was given a variety of oral medications, but continued to suffer from severe pain and constipation. “Tests showed there was no movement in the bowel and the colon wasn’t working properly due to a problem with the nerves. “When she was five years old, she was referred to a gastroenterologist at Alder Hey, and then to a dietician. At six, she was referred back to the surgeon, who tried several small procedures, including manual evacuation of the bowel and Botox injections. Then, at six and a half, she was given something called an ACE (antegrade colonic enema), which helps to empty the bowel through a tube inserted directly through the tummy wall, through the appendix and into the large intestine. Nothing seemed to help, and her faecal impaction got to the point where the surgeon couldn’t evacuate it manually. She was in so much pain.”

In March 2020, two months after Poppy- Mae’s seventh birthday, the decision was made to give Poppy-Mae a subtotal colectomy (removal of the entire large intestine) and fit an ileostomy bag into which waste product from the small intestine would be diverted. Around the same time, she was also diagnosed with hypermobility, an unrelated condition that affects her range of movement.

“She was getting a lot of joint pain, so her paediatrician did the Beighton score, which diagnosed her with hypermobility. Her upper body is double-jointed, but there is very little movement in her lower body. When she walks, her hips don’t really move, so it looks like she waddles.”

Although the colectomy helped with Poppy-Mae’s initial bowel problem and physiotherapy sessions helped with her hypermobility, she still suffers from pain every day. “She is on a lot of medication, including pregabalin, which helps with the nerve pain; dicycloverine, which is an anti-spasmodic used to relieve symptoms caused by gastrointestinal cramps; and paracetamol and ibuprofen to help with the pain; but she is having issues now with her upper gut and stomach. She has fructose malabsorption, so her body can’t absorb natural sugars and she can’t eat much fruit or even ice cream, which is really hard for her. She gets cramps and swelling in her stomach and suffers with vomiting quite a lot. She also gets chronic headaches and fatigue and widespread joint pain in her neck, back, arms, legs and feet, caused by the hypermobility.

“She can’t do high-impact sports and needs a wheelchair if we go out for the day because of her joint pain. We also have to make sure we have no plans at all the next day because she will be so exhausted. She recently went away with the school on a residential, but her teacher had to bring her home every night because she needed help changing her ileostomy bag and Poppy-Mae was self-conscious about this with all her friends in the dorm. So, it really interferes with her life.

“It has been really hard for both of us, and I ended up having to take time off work and get some mental health support. As a parent, you can feel like you’ve failed your child and not protected them, and you try to put your own feelings to one side to just focus on them, which can sometimes get too much.”

One thing that has helped to get Sharon and Poppy-Mae through their difficult times is the care and support of the team at Alder Hey. “The staff will always go the extra mile, from the nurses who always offered to sit with Poppy when I broke down, to the consultants’ secretaries who always get back to us so quickly. The play specialists are also fantastic, using distractions when Poppy-Mae has been going through procedures to make the experience less frightening.

“The medical care Poppy-Mae has received has been excellent and I have always felt like she is in the best hands. She was recently referred to the complex chronic pain and palliative care teams at Alder Hey to help manage her long-term pain, and they are going to try a new type of drug on her that will hopefully help. She has also been referred to a psychologist to help her deal with the emotional effects of her pain. The doctors think it’s a case of Poppy learning to manage her pain and live with it using a combination of techniques.”

During the pandemic, the hospital supported Poppy-Mae and Sharon with online appointments and group therapy sessions. “We attended group sessions about coping with chronic pain where they showed us different techniques you can use, like distraction, and they gave us the idea of a calming box, which is a box in which children put all their favourite things, then get it out if they’re feeling anxiety or pain. This was something Poppy found really helpful. The sessions have also been really good for me, as I have been able to speak to parents of other children in chronic pain who are going through the same things as us.

“We are so grateful for all the support we have received from the hospital over the years; it has made such a difference. No child or parent wants to be in hospital, but at Alder Hey it doesn’t seem like a hospital due to the compassionate care it offers and the facilities it provides for play and relaxation. Alder Hey really has supported us all as a family, which has been absolutely fantastic.”

THE CANDIS BIG GIVE PROJECT: ALDER HEY CHILDREN’S

GIVE OUR TINY PATIENTS THE BEST POSSIBLE START!

FUNDRAISING TARGET: £58,400

The money raised in the Candis Big Give will go towards a 22-cot surgical neonatal intensive care unit (NICU) at Alder Hey Hospital, to offer parents and their newborn babies the best possible environment in which to get well.

Neonatal families often need to stay at the hospital for a long time and lots of different treatments can be needed. The new unit will mean as much care as possible can take place in one room and families can stay with their babies in private rooms while they access the best care. This will give parents a chance to bond with their newborn and provide a space where siblings can also stay, so they can be together as a family.

The new unit – in partnership with Liverpool Women’s Hospital – will reduce the number of transfers of newborns between Alder Hey and the Women’s Hospital, as babies will be able to stay in one hospital if they require multiple treatments. This means that newborns who are in a critical condition can be moved around as little as possible, leading to better clinical outcomes.

Visit alderheycharity.org for more information

WHAT ALDER HEY CHILDREN’S CHARITY MEANS TO ME

Fiona Ashcroft, CEO of Alder Hey Children’s Charity, explains why she loves working for the organisation.

“I grew up in Liverpool so have always been familiar with the work of Alder Hey Hospital, and after joining the charity in 2019, I quickly discovered what a truly amazing and inspiring place it is to work.

Alder Hey is very focused on being a world leader and really bringing the best treatments to children, and it’s one of the top ten paediatric children’s hospitals in the world.

We are more than just a hospital and talk about being a children’s health park. We have two mental health buildings, a bereavement centre and a world-leading research institute. We also have the biggest children’s hospital in the country, where we care for over 330,000 patients each year.

Hospitals can be a scary place, no matter what your age, but at Alder Hey we really focus on providing the best possible experience in the best surroundings. Our families and supporters often talk about the magic of Alder Hey and that’s what we try to bring every day.

At the charity, our job is to raise funds for enhancements that are above and beyond, including life-saving and world-leading medical equipment, pioneering research and world- class facilities for staff and patients, as well as those smaller things that make a big difference, such as toys in treatment rooms, entertainment and an arts and music therapy programme.

We support the charity’s vision of giving our patients the best possible experience, and it’s wonderful to get to see the impact of what we do every day. I love meeting patients, families and our wonderful supporters, and am always amazed by the efforts people make to support our hospital. It’s truly remarkable and inspiring to meet so many incredible people and I feel very lucky to be part of the Alder Hey family.”