‘People didn’t know what to say to me, but how could they, I had just lost my 20-year-old daughter’, says Monica Barton

Mollie Barton passed away while she waiting for a liver transplant.

Mollie Barton passed away while she waiting for a liver transplant. - Credit: Archant

As part of our We Need To Talk campaign, we spoke to nurse and part-time therapist Monica Barton about the tragic death of her daughter Mollie and the personal battles she and daughter Lauren endured before they were able to emerge from the darkness of grief.

Mollie, a former St Ivo School pupil, was born with a rare genetic disorder called Alagilles Syndrome, which affects the heart and liver.

She was not expected to survive past her first birthday, but at the age of two, Mollie underwent open-heart surgery to repair two holes in her heart.

Over the next few years, Mollie faced huge challenges, but managed to lead a ‘near-normal’ life.

“She had this most amazing ability to make people laugh and it was a laugh from the depths of her belly,” says Monica.

Mollie (right) with Lauren.

Mollie (right) with Lauren. - Credit: Archant

“She faced life with a smile on her face despite the adversity that life threw at her.”

In December 2014, Mollie became unwell. Family members noticed she looked yellow, so, in January, 2015, she was referred to the Queen Elizabeth Medical Centre, in Birmingham.

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Mollie, who had the rare B+ blood group, required numerous blood donations and her liver was failing, so she was placed on the transplant waiting list. Monica and Lauren, aware of the statistics for available organs, “hoped and prayed for a miracle”.

Sadly, Mollie developed pneumonia and septicaemia and then multi organ failure before a liver became available and she passed away on April 29 2015, aged just 20.

“Everything Mollie went through during the last month of her life was a war of battles. She felt pain and she struggled and she gasped for air and I saw that every second of the last month, which was utterly heartbreaking,” explains Monica.

“My life has never been the same since, but Mollie taught me what’s important in life. She’s taught me so much more than I could ever have learned from any other experience. She taught us how to laugh and the importance of having fun and of family and being positive in the most difficult of times.”

Monica says in the days, weeks and months after Mollie’ death she shut the world out as she struggled to comprehend what had happened.

“I remember about four months after Molly passed away, the crowds had gone, the flowers and the cards had stopped and I thought how can I ever face life without Molie. How was Mollie’s sister Lauren going to cope. How was I going to support Lauren through life without her sister. How were we going to move in any direction and to live and enjoy life ever again. A few weeks after Mollie passed away I met someone who knew Mollie and for 10 minutes she talked about the weather and then she left. I was dumbstruck, frozen to the spot, I thought ‘how can she talk about the weather when she knows that I have just lost my 20-year-old daughter’?

“I realise now that people just didn’t know what to say to me. How could they? They didn’t want to upset me and make me cry or say the wrong thing.”

Monica says she took time out to deal with her feelings, but Lauren’s way of coping was to stay busy.

Lauren set up the B + clothing company and continued to write the Waiting Game blog she set up with Mollie. She danced, ran marathons and threw herself into fund-raising for the Childrens’ Liver Disease Foundation.

“Lauren was so busy that she managed to avoid the reality and then she injured her ankle, was unable to dance and run, and the downward spiral began. Monica says she was forced to stop as she could no longer sustain what she was doing which was hiding from the grief. Lauren went on to have a breakdown and it took nearly two years before she was well again.

“I took four months off work and used breathing techniques, yoga, meditation, walking, reading and listening to podcasts. I faced the silence and however painful, I refused to suppressed the feelings I had.”

Monica went on to train as a cognitive hypnotherapist and set up Living with Loss.

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She says: “Often it is the simple things that don’t cost any money that help us. I will always have my bad days, the days when I stay in my pyjamas and eat chocolate and put on a sad movie, but that’s fine

“The happiness only comes after feeling the pain rather than suppressing it. I have learned to live with my loss.”

More information about Living with Loss is available at: www.monicabarton.co.uk and the B+ clothing company, which raises money for childrens’ liver disease: bpositivemollie.co.uk.