I hope that the poem from Lorna and the video of Chloe have helped bring her story to life as I know the majority of you weren’t lucky enough to meet her. I would like to share some of my own reflections to help you get to know her a little better. I will also try to raise awareness of the journey of a premature baby and their families and to share our early thoughts on Chloe’s legacy.

Firstly some reflections on life as parent of a premature baby

I have said to many of you throughout this journey that I wouldn’t wish this experience on anybody. Yet, in the time of reflection that Lorna and I have had over the last month and throughout the time Chloe was with us, we wouldn’t think twice about signing up for that experience again. The chance we had to get to know our little girl and the memories we can take away are precious. That’s the dichotomy of being a premature parent…at times it is absolute hell, a true rollercoaster of two steps forward and one step back (or vice versa)…but you want to ride every single minute for the cherished moments with your child you are rewarded with.

Our overriding experience of having a premature baby is that whilst you have a role as mum or dad, the role is very different to a normal parent. For perhaps the first time in our adult lives we weren’t in control. No amount of effort, money or love could change the situation. Chloe was writing her story, we were her audience helping wherever we could. We couldn’t plan for her coming home, or even progressing from intensive care for fear of your dreams not materialising. The furthest we dared to think ahead was a 2-3 day plan for getting her off the ventilator, which became our obsession.

Throughout this you are living life on edge…going to bed fearful of a phone call from the hospital in the middle of the night, listening helplessly when the emergency alarm goes off or just leaving the nursery worried, when the stats on her monitors are trending in the wrong direction.

And yet as each day passed, we did feel more like parents. We could start to read the needs and the moods of our growing daughter and better understand and contribute to the medical plans being made. One of my most precious moments as a Dad was her 4th attempt off the ventilator. The doctors and nurses couldn’t calm her and I stood crouched over her aquarium for 45mins stroking her head and reassuring her before she finally went to sleep. . In those moments we were real parents with a real daughter and they will stay with us both for the rest of our lives.

Chloe Filipa Grace Calder was a unique little girl.

If you google her full name, you will find that it is one of a kind and she reflected this in the short time she was with us. Despite being so young and small, her personality shone through. She was known to many of the nurses on the ward as being feisty, independent and determined– Lorna and I have racked our brains and can’t think where those traits came from!

Everything was always on Chloe’s terms and she liked to take control of a situation. Throughout, she found her way of telling us what she needed or in many cases didn’t need, often choosing to fend off the medical staff from doing their scans, giving an injection or changing her nappy. However, she was a smart little girl and she responded differently to Lorna and I, giving us cherished moments together.

Premature babies with a breathing tube can’t make a sound. Chloe used to use her beautiful eyes to convey how she was feeling –playful and happy on her best days, at other times pained as she went through periods of hunger, or suffered rage brought on by the steroids. In her playful times her sparkling eyes would work in tandem with her curious tongue exploring what was going on. You saw this on the video from the time she received her steroids by nebuliser in one of her last rounds of treatment. She sat calm, tongue fully out and wiggling as she received an 8 minute blast of cold air to the face – not the response any of us expected!

Premature babies are known as ‘warriors’ and life for Chloe was never peaceful, rarely getting more than a couple of hours respite from medical care and attention. Yet throughout everything she endured, she was always graceful. We saw this as she lay calmly sleeping, long fingers by her face and big eyes closed shut (or occasionally peeking open to see who was visiting). But she also showed grace in the tough times, taking the worst that her extreme prematurity had to throw at her.

All in all, she was an incredibly cute, smart, determined and independent little girl who will always be a part of our family and in our lives as we move forward. We couldn’t be more proud.

Sat watching baby TV by her incubator and in reflecting more recently, we have learned a lot about life from this experience and from Chloe.

There are 3 learnings in particular we wanted to share with you today:

Life is precious and worth fighting for – Chloe joined us at 25 weeks, 3 and a half months before her due date. Whilst perfectly formed on the outside, Chloe had needed so much energy on the inside to continue critical stages of her development. In parallel, she had to deal with the onset of her chronic lung disease – a terrible side effect of the ventilator that kept her alive. As if that wasn’t enough, premature babies have no immune system so all progress is at risk from infection. Despite her small and fragile state, she fought incredibly hard through 17 intubations / extubations, 5 infections and countless blood transfusions, tests, temperature checks and scans. Because of this effort, we were able to spend 82 treasured days together. Life is precious and worth fighting for, just like Chloe did.

Life is delicate and can be snatched away at a moments notice. Living life in the present is important. Having survived premature birth and battled her early issues with blood pressure, Chloe had stabilised and started to grow. At this point, in many ways, she had a good chance of making it home to us in Balham. That wasn’t to be, but fortunately for us, she was not snatched away in an instant as she worked hard at the end to give us precious time to say goodbye.
Throughout, we learned the need to be present – not to think too much about the future or the ‘what ifs’ of the past so that we did not miss what was happening in the present. It was important to connect with and make the most of each moment, a lesson we will keep with us in future.

Life’s toughest times are only manageable with love and support from others around you. We simply couldn’t have made it through this without of all of you. Chloe brought the Calder and Carmichael families and this support network closer together and made us new friends. There are times in life you cannot just get your head down and battle through and this was one. We met many who did not have such support. Chloe, Lorna and I were fortunate to have you all behind us, and for that we cannot thank you enough.

Chloe’s Legacy

Lorna and I have been overwhelmed at the response to sharing Chloe’s life and her tragic death with you all. She has touched people she has never met in the US, South Africa and Australia and brought people back into our lives we haven’t spoken to for 10 years or more.
This has helped Lorna and I cope and also made us keen to ensure Chloe is not forgotten and her legacy lives on. We would like her legacy to be 3 fold.

Firstly, we would like Chloe to be remembered. She was our first born who will always be a part of our family and a real little lady with a personality. Typically people remember the parents that lost a child…we would like people instead to remember that Chloe lived. To remember who she was and what she taught us. We hope her legacy will help to do that.

Secondly, Lorna and I will make sure Chloe continues to influence our lives. We will spend time climbing mountains in her name so we can feel close to her, we will follow her lead by exhibiting her grace and determination in all things we do and we will keep in touch with new friends we have made on the journey. We will continue sharing our vulnerability in the hope that it enables others to do the same, and we will keep in mind how precious life is with her memory as our reminder.
I know many of you have also adopted a slightly different outlook on life as well since she came into your lives.

Thirdly, we would like Chloe’s story to raise awareness of the challenges of premature and sick babies and to help raise funds to improve the lives of others in future. We plan to work with two charities in Chloe’s name to help achieve this.

Initially we have focused our efforts in raising over £20k for First Touch, the unit charity at St Georges that was most active in supporting Chloe on a day to day basis The funds will will be used to buy a new state of the art incubator to bring the latest technology to others in need - this seems fitting, as 'Flippers aquarium' was Chloe's home for every day of her life. In time, we will also work more actively with Bliss, the national charity for premature and sick babies with UK wide reach and influence. Their goal is threefold: empowering families, influencing policy and practice and enabling life changing research. They have a goal of reaching every family of a sick or premature baby across the UK and we would like to support them in this.

I know many of you felt helpless during Chloe’s short life. However, there are a number of ways we can help raise awareness and funds as part of Chloe’s legacy, if you would like to be involved.

Firstly, we know that many of you love a charity based challenge (!).In the years ahead, if any of you are looking for a cause then we would love it if you wanted to do something in memory of Chloe. Rest assured we will not leave the hard yards to you guys. I vowed after Stockholm last year “never to run another marathon unless it was London” and Bliss have kindly offered me the chance to do this in memory of Chloe on April 23rd this year!

In addition, we promised Chloe regularly that we would take her to the mountains so plan to scatter her ashes near our wedding venue in Chamonix and climb some big mountains as part of our fundraising efforts.

However it is not just about fundraising but also awareness. Hopefully you can understand prematurity and the loss of a child better from the facebook updates, whatsapp groups and our experiences shared today. Lorna and I have felt that challenges conceiving, miscarriage, still birth, premature birth and losing a child can be a taboo topics that people find it difficult to talk about. We hope you are now better equipped to support others who have the misfortune to go through something similar and to let people know of the great work done by charities, such as Bliss and First Touch.

Coming to terms with the loss of a child is the hardest thing we have ever had to do. We would give literally anything to still have Chloe here and we miss her dearly. Life can feel hollow and directionless having built a family, only to for it to be taken away too soon. However, our memories of Chloe and her legacy going forward are what will help us through. It would mean the world to us if you could support us on that journey.

Some thank yous...

To Chloe, for fighting so hard to spend time with us, for all she has taught us and the light she has filled us all with.
To the nurses and staff at St. George’s NNU – for their unfailing dedication, for ensuring our circumstances didn’t stop us being a family, and for their compassion
The other parents from the unit for their companionship, support and love. Also, to wish their little ones all the best.
Of course, all of you – for the unfailing love and support you have shown us throughout the very toughest of times.