Six-month-old Hope Pickersgill has spent most of her life in hospital battling multiple life-threatening heart defects and other conditions.
Many times her parents, Leanne and Mike, were warned she had just days to live and to prepare themselves and their family to say goodbye.
But Hope has defied doctors’ predictions and is now at home in Barnsley doing well. And to say thank you the family is organising a fun day this weekend for all those who supported them through the last six month.
It was at her 20-week scan that Leanne was told that medics thought her unborn baby had a cleft lip and a host of problems with her heart.
“My 20-week scan was a day I will never forget. A day I was alone due to Covid,” recalls the mother of three. “I had a sense of relief as I know these things can be fixed. But then he brought up the heart defects and my own heart dropped. The midwife took me into a separate room where I rang Mike, my partner and Hope’s dad. After hanging up the phone I just broke down into tears.”
Hope was born with double outlet right ventricle, a hole in the heart and severe pulmonary stenosis – all causing her heart not to work properly and affecting blood circulation. As a result, Hope has undergone many procedures including two open heart surgeries at Leeds Children’s Hospital.
In May things came to a head and Leanne and Mike were told to expect the worse.
“We were told her body was shutting down. My whole world came crashing down. The doctors kept saying sorry and that it wasn’t looking good but I was just numb and heartbroken and Mike was a mess too.”
Doctors told the couple that they had two choices – either make Hope comfortable and be with her but she would only have two days left at the most, or attempt a high-risk surgery to shut a leaking heart valve off completely, leaving the tiny baby with only one pumping chamber, and with a good chance she wouldn’t make it through surgery.
“They said they didn’t think they would ever be able to repair her heart but if this surgery worked it would allow more time for more plans, maybe even transplant further down the line but they’re not looking that far ahead yet,” says Leanne.
“We decided to go for the surgery. We couldn’t not. No way were we going to give up after she’s been fighting so hard to survive.
“Before she went we painted her little hand and foot and got her prints on canvas. Six hours later we got the call that she was out and stable we just had to wait while they got her all set up on PICU.”
They were also told that Hope’s heart is unreapairable so are unclear what the future holds. But on June 14, after three months in hospital, Hope was discharged from Ward L51 and is now at home with her family.
“We were in Leeds for 12 weeks and all the days dwindled into one. We had two children at home, Kaylen and Eve, so Mike would often be in Leeds for three days and then we’d swap so I could spend some time with the children at home, but it was hard being away from Hope,” says Leanne.
During treatment at Leeds Congenital Heart Unit Leanne and Mike were supported by the Sick Children’s Trust at its ‘Home from Home’ Eckersley House which has given them a place to stay just minutes from Hope’s bedside. They have also been helped by Children Heart Surgery Fund, who have supported the Leeds Congenital Heart Unit for more than 30 years.
“Eckersley House made our situation that little bit easier. It would take me 45 minutes to get to and from Barnsley every day, but by being at Eckersley House I was just five minutes away. Just being across the road from the hospital means I had less anxiety. I didn’t sleep too well but I could rest a little and get things done when I couldn’t be with Hope.”
To thank the Sick Children’s Trust and CHSF, which has also contributed over £500,000 to the running of Eckersley House, Hope’s family has organised a family fun day at Dodworth Miners Welfare on Sunday to raise vital money for both charities. The event will feature a football tournament, penalty shoot-out, music from local bands, craft and food stalls and much more to thank both charities for helping Hope and the family cope with their time in hospital.
The Children’s Heart Surgery Fund has given Hope three Katie bears plus a medal and certificate to mark her surgery. Sarah, the charity’s family support worker, would meet Leanne every week.
“She has been a big support for me, not only with giving Tesco vouchers and helping with travel expenses for Hope’s dad, but by actually being there to talk to and having tea breaks. It helps so much knowing I have someone here in Leeds I can turn to for help.
“We have other events happening including a two-day walk that my cousin is doing from Leeds to Rotherham and back again, which will be 72 miles – the combined amount of years that the Sick Children’s Trust and CHSF have been running. Then on August 1, we will be doing a sponsored walk from Barnsley to Leeds, the journey Hope has travelled. We just want to do something to give back.”
Jane McHale, Eckersley House manager, said:“Leanne and Mike have been going through an emotionally exhausting time. By giving them a place to stay at Eckersley House it gives them one less thing to worry about. They could focus their energy on Hope while being able to recuperate for a few hours a day at Eckersley House. We are so humbled that they are organising lots of fundraising events for us and CHSF, it really means the world to us.”