Chloe's Story
Chloe was born on 22 February 2012, at 9.30am. A beautiful, and apparently healthy, little girl. A much anticipated playmate for her older sister, Sophie, aged two. Life was great.
But at the age of only eleven weeks, Chloe suffered a sudden and major respiratory collapse.
Chloe survived this initial collapse, thanks to life-saving treatment over a twenty-four hour period from the Portland Hospital, UCH (University College Hospital, London), CATS (Children’s Acute Transfer Service) and GOSH (Great Ormond Street Hospital). However, following this episode, Chloe would never breathe unassisted again, and would never come home.
On admission to GOSH, Chloe spent six weeks in intensive care, fighting for her life. Eventually, after showing increasing signs of stability, Chloe was transferred to the respiratory ward. This was a big step forward. But, after a short, precarious three weeks, Chloe suffered another respiratory crash and was rushed back to intensive care.
And so, this became Chloe’s story. Short periods of stability followed by dramatic crashes back to intensive care. Each crash sudden and unexpected. Each crash resulting in further medical intervention, and increased ventilatory support.
At the age of five months, Chloe underwent a sternotomy for a PDA closure (heart-related) and lung biopsy. At the age of six months, Chloe had a PEG (feeding tube) inserted.
At the age of seven months, Chloe had a tracheostomy. This allowed us to remove all breathing apparatus from her face. For the first time in many months, we could see her beautiful face again. But, we lost her voice. Nevertheless, the tracheostomy was life-changing for Chloe, and for us. After four months, she was finally allowed away from her bed-space, and she was allowed outside.
We took Chloe to Coram Fields, a park near GOSH. She looked at the sky and the leaves on the trees in amazement. She smiled when the wind blew on her cheeks. The nurses described her grinning “like a cheshire cat”. The world outside was so new to her. And even with medical staff and machinery accompanying us on these walks, it was a taste of normality, and it was wonderful.
Chloe spent 6 months at GOSH, putting up a courageous and inspirational fight. She wanted to live, and she kept defying the odds. She became popular at the hospital. Her enchanting smiles drew crowds. Her eyes lit up the room. Her bravery was often recounted.
Despite her predicament, she found happiness. And her fighting spirit enabled us to never, ever, give up hope. We believed, every second of every day, that Chloe would come home. The fifth and last time Chloe crashed, it was, in fact, the day after we had started the process of transferring Chloe closer to home. She had shown great signs of stability and increased strength. We all believed Chloe would return to the respiratory ward imminently. After all, she was a fighter and she had won this battle before. But this time, Chloe’s lungs defeated her.
The last week of Chloe’s life was difficult. Each minute that went by was another minute of her life saved. Despite trying and fighting until the very end, Chloe’s last x-ray showed that there was no longer any hope. The pressures required by the ventilators to keep her alive were now starting to puncture her lungs. Chloe’s oxygen saturation levels continued to drift downwards, despite extreme medical support. We talked about a lung transplantation, but it was a pipe dream. Even if Chloe made it through this episode, the only future for her was a world of invasive medicine, and of pain, with little chance of recovery.
And so Sophie was brought in to say goodbye.
We spent a beautiful night with Chloe on our last night together. It was private and serene. We talked, we sang songs, we read books. Chloe waited, and gave us that time together. We told Chloe that we understood she was tired, and we promised her that we would keep her spirit alive, forever.
Chloe passed away on 22 November 2012, at 9.15am. She was 9 months to the day. She died peacefully in our arms, with dignity, and without pain.
During Chloe’s short life, her illness was never formally diagnosed. In fact, at the time, her condition had never been seen before at GOSH, or indeed worldwide. The doctors struggled to understand why Chloe’s lungs were so damaged, and why she could not self-ventilate. The major hope was that as Chloe grew, her lungs would generate new cells that would be healthy.
Several years after Chloe’s death, with the help of a lung biopsy taken at 5 months old, a post-mortem and further medical research, the team at GOSH were able to piece together the puzzle of Chloe’s condition.
We now understand that Chloe’s illness was congenital. Crucially, however, a comparison of the five-month old and post-mortem biopsy showed that Chloe’s lung cells exhibited the same damaged structure between the two. As Chloe grew older, the new lungs cells which she generated remained faulty. In retrospect, therefore, Chloe’s illness was in fact terminal.
As medical research continues today into Chloe’s diagnosis, one potential thread is looking into a gene mutation that causes epilepsy in boys, but chronic and fatal lung disease in infant girls. Still, there is no official name for what Chloe endured.
Chloe fought for her life every day that she was in hospital, suffering pain, discomfort, surgery and daily treatment of some kind. Her medical team said that simply breathing for Chloe was like running a marathon every day. Yet despite this, Chloe enchanted so many with her glowing smiles and dogged bravery.
Chloe remains a part of our every day lives. We talk about her, and to her, every day. The children say goodnight to her every night. And every month, on the 22nd, the day of her birth and her death, we visit GOSH and Coram Fields to release balloons for Chloe.
Chloe’s incredible spirit serves as true inspiration, and she is missed terribly.
The Chloe Mansfield Fund was set up in the days shortly after Chloe’s death, with the express aim of keeping Chloe’s spirit alive, whilst helping to improve the lives and prospects of very sick children who, like Chloe, are in hospital and not at home.
The fund either seeks or creates discrete, well-defined projects that will have a direct, often immediate, unique and long-lasting impact on the well-being of children and families at GOSH today, and in the future.
Chloe’s fund has also been set up in recognition of all the fantastic doctors, nurses and many other professionals who took care of Chloe and our family during the most difficult period of our lives. The care given to Chloe and to us was outstanding and truly first class. The staff became our family, and GOSH became our home. Above all, because of GOSH, we were given a further 6 months with our daughter.
There are other children at GOSH who, like Chloe, are very sick. The staff at GOSH perform miracles, they really do. But they need our help. And through raising money in memory of Chloe, we hope to fulfil our lifelong mission of keeping Chloe’s inspirational spirit alive, whilst helping to save another child’s life.