A mother's perspective, Thuy Do

Good evening everybody. My name is Thuy and I am Chloe’s mother. Thank you so much for giving me this opportunity to talk about my little girl.

Holding a ball in memory of Chloe had been an idea that came up shortly after her death. Whilst initially a pipe dream that I never imagined could come true, I was determined to do something phenomenal for Chloe. And so here we are. So thank you very much for coming to give your support and I truly hope that you go home tonight reflecting on what a fabulous night it has been.

Of course, I did not do this alone, and we would not be sitting here had it not been for the dedication of my incredible ball committee. So a huge and heartfelt thank you to my entire committee, and in particular to Will, Alyssia, Ana, Clare, Melissa and Nikki, for giving your time so generously, and for achieving something so extraordinary for Chloe. You are the true meaning of friendship.

The reality is, of course, I wish with every bone in my body that I was not standing here in front of you this evening. I wish I could turn the time back to when life was normal. When my mind was filled with ordinary worries. I crave that normal life.

But that part of my life ended the day Chloe fell ill. And how it has come to be that tonight, two and a half years on, I am standing here talking about my daughter, her life and ultimately her death - how and why that happened to Chloe, I will never understand.

I had previously thought that if you lived your life by doing the right thing, well then life would be ok. And then at 11 weeks old, Chloe stopped breathing. And not a single person could tell me whether my baby was going to live or die.

The truth is, Chloe would have died at 11 weeks old had it not been for the unbelievable skill of her medical team, many of whom are here tonight. A medical team who worked frantically to understand why a baby, who had been born to a family with no history of illness, was at GOSH fighting for her life. To Chloe’s medical team, you gave me a further 6 months with my daughter, and for that, I will never know how to thank you enough.

Many of you will have heard the phrase “Chloe Mansfield, an inspiration”. And if I could explain to you how hard Chloe fought to live and just how much she suffered, and yet describe to you her beautiful smile, her forgiving smile, and her big round eyes full of love, I am sure you would agree that there is no better word to describe Chloe than “inspirational”. The horrific procedures that Chloe endured, the effort required for every breath she took, the fear in her eyes when doctors held her down and forced open her airways, the need for intervention so urgent that there had been no time for anaesthesia - all this against a backdrop of a little baby who would smile when anybody approached her bed, who smiled when she was pricked for blood and who even managed a smile when so much paraphernalia was on her face to help her breathe that open sores pierced through her delicate skin. A baby girl who beamed when her 2 year old sister came to visit, who cuddled me tightly when I would climb into her cot, who giggled with delight at raspberries, who found utter fascination in balloons, who stared in amazement at the open sky and who loved the wind on her face. A little girl who made friends throughout the hospital, because every time she crashed, she fought so hard to live. Chloe taught me courage. She is my inspiration.

From the day Chloe was admitted to GOSH, our definition of family changed. Day in, day out, for six months, Will and I played tag team, one manning life at home with Sophie, our 2 year old, one caring for Chloe in hospital. In many ways it became such a simple way of life - nothing else was important, there were no other competing priorities. The diary had been cleared. Indefinitely. And the support given to us at GOSH was unbelievable - we made new friends with staff and other families. We talked about when Chloe would come home, how quickly we would get up to speed in caring for her with a tracheostomy. But whilst Chloe did show some signs of getting better, this was against a backdrop of increasing ventilatory support and frequent crashes back into intensive care.

The last time Chloe crashed, it had, as usual, come with very little warning. I will always remember William rushing into the room and somehow, through a frenzy of activity, alarms and medical staff, Chloe found him - and with serenity and courage, she smiled at him. And back in intensive care, as she was about to slip into another induced coma, her last, she reached out her little hands and touched our faces. It was really as though she knew that it was the last time we were going to see her awake, and she wanted to tell us that she was tired.

The last week of Chloe’s life was horrific. For every hour longer that she survived, a battle had been won. But by this stage her lungs were beginning to burst from the pressures of the ventilator. To be sat down and to be told that even if Chloe made the next few hours, there was little hope left - you do not believe, you take that hour that is on offer. You do not dare to think what it means if your child dies. You simply never give up. 

However, despite extreme medical support, Chloe’s oxygen saturation levels continued to drift downwards. And so Sophie was brought in to say goodbye. That night Will and I shared the most serene night with Chloe. She held on, and she gave us that night together. We read stories, we sang nursery rhymes, we talked and we cried. And in the morning, we decided to withdraw support. We wanted to let Chloe go in a controlled, pain free and peaceful manner - no more crash alarms, no more crowds. Just Chloe, Will and I. Chloe died in our arms on the morning of her nine-month birthday — it was quick and she was beautiful. And to be able to hold her again without any wires or tubes was very special.

When we finally left GOSH that day, I recall looking up at the clear winter sky, and thinking that Chloe was up there somewhere, now looking after me, even though I had failed so miserably in looking after her. For every night that I left Chloe sleeping in a hospital cot, cared for by a nurse instead of her mother, I recognised that I had failed her. I had brought Chloe into this world, but I could not protect her and ultimately, I had failed to bring her home.

For me, the saying “time heals” is a mis-characterisation. The journey of grief is one that I suspect will never end for Will and I. It will take different forms but it does not go away. Of course, it is not true to say that I am never happy. But you know that bellyache full of laughter, the one where you are laughing so much it hurts, that pureness, that sheer joy. That has gone for me. And in its place is a tentative happiness. The feeling of pain, of guilt, ever present. The loss irreplaceable. And a broken family to endure for the rest of my days.

But for me, the best way to deal with my grief is to talk about Chloe, to actively reflect on the short life we shared together, and to fundraise for this wonderful hospital in her name. 

Chloe remains a part of our everyday 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 to release balloons for her. She will never be forgotten. She is with me, wherever I go, in whatever I do.

I came to understand what it really meant to have a sick child the day I walked through the doors of GOSH. The suffering of children like Chloe at GOSH is heartbreaking, and the bravery of these children and their families is truly remarkable. I cannot change what happened to Chloe. But what I can do is to ensure that she remains remembered and relevant, and that through her bravery, I can turn my grief into something positive - to do anything in my power to help ease the pain, however small, for other children and families who might share our history.

GOSH relies heavily on charitable donations to provide the care and environment that children like Chloe deserve. And I can promise you this - that every penny donated tonight to Chloe’s Fund will go directly to these children, who fight every day and every hour for a chance of life. It is important to Will and I that the initiatives that Chloe’s Fund supports will help the children of GOSH in a unique and permanent way, initiatives that perhaps do not receive top priority in a climate of finite resource.

And the reality is this. As we sit here tonight, right now, there is a child 10 minutes away, at GOSH, who is fighting for his or her life. And there is a mother, or a father, who is sitting at the bedside, just as Will and I were, wishing desperately for their child to be given another chance - one more hour, one more minute. And of course asking, why a child, why a baby, why us.

The Chloe Mansfield Fund will be a lifelong mission for Will and I. But I hope it will not be too much of me to ask that, for tonight, at Chloe’s Ball and in this beautiful setting, you join us in this mission and help us to raise as much as we can for this incredible hospital, because you really will make a difference to a child’s life. And as you do so, to remember Chloe, a unique, and inspiring, little girl, in life, and in death. 

Thank you.