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At 5.59 am on the 1st of July 2021, 13 days passed his due date - our beautiful baby boy Lewis was born. Now of course we are biased but when midwives who aren’t even involved in your care, one after another, knock the door to your hospital room to get a look at the gorgeous, chunky and long, olive skinned baby boy sleeping soundly in the basinet, the words ‘he’s just so beautiful’ echoed along the corridor of the maternity ward and indeed those very same words continued to echo throughout Lewis’s 17 months on this earth by so many who had the privilege to meet him, we heard them so often they will be etched in our minds forever along side our favourite images of him.

Once home with Lewis, now as a family of three, instead of falling into a sleepless and chaotic yet blissfully happy newborn bubble, Lewis was having difficulty feeding and gaining weight, he was so sleepy we had to wake him every 3 hours for the first 3 to 4 weeks to ensure he would feed and put weight on, he had a severe tongue tie which we had snipped at 5 weeks under the advice that the improvement would be immediate – it was not. When he was awake he had a funny little twitch in his shoulder accompanied by a tight blink of his eyes, he would often choke on his milk, his breathing sometimes seemed erratic and he had a high pitch squeal when breathing in at night. I raised these concerns, along with a general feeling of unease that ‘something’ wasn’t quite right with my baby several times with several different health care professionals. Time and time again I was told ‘he’s fine’, ‘babies twitch sometimes’ ‘he’s sleepy because he was big at birth’ ‘you’re an anxious first time mum’ and the one that really took the biscuit ‘stop looking for something wrong with your baby’. Finally, at my wits end, after weeks of round the clock pumping and feeding pumping and feeding, a tired anxious mess I began to believe I was the problem and that everything was indeed fine. But something compelled me to make a call to our local GP surgery where a doctor finally took me seriously and shared my concerns with a consultant on the DGRI paediatrics ward. We were asked to take Lewis in as soon as possible. Little did we know that this trip would become the first of so many anxious drives along the A75, stays on the ward and the last day before all our lives would be changed forever.

The following day, after examination by the consultant, Lewis was sent for an MRI and Andrew and I were warned that they were very concerned about Lewis and the expected result would likely be very bad news. The following morning after a night of clinging on to any morsal of hope that the consultant had got it wrong, we were given a cautious diagnosis that would need confirmed through further testing. From this point on, we both vividly remember the total lack of hope, there was no question, no possibility that it was not as bad as first expected, if anything it couldn’t possibly be worse, no miraculous survival stories of children with the same condition, no medicine or therapy that could change the outcome, it really was as bad as it gets.

In short, several of the key structures of Lewis’s brain had not formed correctly in utero, key structures which control many of the vital and usually automatic functions such as breathing, heart rate, temperature control, movement, and eye site. We were warned that Lewis may not live to his first birthday, that he would likely suffer seizures that would be difficult to treat and would be at a very high risk of repeated respiratory infections each of which could take his life either suddenly or through a slower deterioration. We were introduced to an anticipatory care plan, a document that we would need to visit and amend throughout Lewis’s life which would detail some of the complications or situations Lewis may face and how we as his parents would want him treated by the medical team - this is where we first learned the term ‘quality over quantity’ and what that would mean for our family and our beautiful boy.

We spent 3 nights in the hospital but quickly realised we wanted to be at home with our boy – something that would become a theme throughout Lewis’s life as home was where he was happiest. Upon discharge, we were kindly told to take Lewis home, to love him and to make as many memories as we could. Can you imagine that? Going from the happiest days of your life to the worst imaginable in the blink of an eye, being told your newborn baby was going to die, but with no idea as to when and how, but before he did there was a chance, he could experience some horrible, debilitating, and painful symptoms? That you and your child now belong in a world of of medications, tube feeding, surgery, seizures, hospital stays, medical teams, blue light ambulance rides, intensive care units, being far from home, therapists, hospice’s and advocacy?

We could never have imagined it either, but this was our life now. The grief was more than words could ever describe, the pain in our hearts a palpable, physical ache but we needed to keep it together for Lewis’s sake. He needed us more than any typical newborn and no one understood his needs like we did.

Just to get through each day we had to take things one minute at a time, one hour at a time, one step at a time, one foot in front of the other. A mantra that we would come to lean on countless times throughout Lewis’s life helping us get through many a new, difficult to treat symptom or a life and death emergency situation. It helped us through to, those early days after Lewis died and many a day since when at times, the grief seems too much to bear.

While caring for Lewis and ensuring all his needs were met, we very much lived in a state of survival mode. Lewis came first above all else and things could change in the blink of an eye so taking care of our own physical and mental health took a back seat while we cared for Lewis around the clock and while Andrew worked full time to ensure the bills would still be paid. Lewis was not born with the privilege of health and there was no medicine on earth that could have cured him, Andrew and I feel very strongly that we owe it to Lewis to live the best lives we possibly can, to keep getting up every day pushing forward while learning to live along side the grief that ever bubbles under the surface.

Looking after and improving our physical and mental health seemed a good place to start so we have taken our metaphorical mantra and turned it into a physical one. Taking one step at a time and putting one foot in front of the other, we intend to complete all 40 walks mapped out in the Galloway 40 Coastal & Country walks book by November ‘23. Climb to the summit of Ben Nevis at night in August and complete all 21 miles of the Edinburgh Kilt walk on the 17th September, all of which will be training for the main event – trekking for 4 days through the Sahara Desert up and over the massive Chegega Dunes in November - all for the love of Lewis.

While we hope these challenges will help us improve our physical and mental health we also want to raise as much money as possible for Children’s Hospice Across Scotland (CHAS) who were a big help to us and so many other families experiencing the unimaginable. And to raise enough money to fund a cuddle blanket which will be coordinated by the DGRI paediatric bereavement team.

The purpose of this blog will be to share with you our families experience, we will talk about Lewis’s life, how incredible and brave he was while enduring some truly terrible symptoms of his condition and how he always worked so hard to get better after each illness and make it through whatever came his way. We lived quietly as a family, getting out and about was difficult and we often never let on when things were really bad or when we were practically living in hospital, so some of what we will share may at times be confronting and difficult to read but we feel passionate about raising funds for these incredible charities who held our hands during the worst moments of our lives and sharing our story is the best way we can think to raise awareness of the work of CHAS and the work that’s happening behind the scenes at DGRI to improve palliative and paediatric bereavement care.

Thank you for making it this far, please watch this space for weekly updates on our hikes, to learn more about out beautiful boy Lewis, the work of CHAS and why having a cuddle blanket available in the region will be such an invaluable asset to any family experiencing the worst thing in the world – the death of a child.

What is a Cuddle Blanket?

Thanks to the brilliant work of charity’s such as Sands who have been moving mountains over the last few years, huge leaps have been made in raising awareness of miscarriage, stillbirth and infant loss while removing the stigma of talking about such heart breaking losses. As such many people will already be aware of the term ‘Cuddle Cot’ which is a piece of equipment that helps preserve a baby’s condition, appearance and dignity thus allowing a family to spend as much time as possible with them at a time when every single moment counts.

Sadly older children die too, but thankfully a similar piece of equipment exists. A Cuddle Blanket is set up slightly differently to a Cuddle Cot, being a larger piece of equipment, it is suitable for children from 18months up to adulthood. It can be set up in a very discreet way allowing a family to spend precious time with their child in a comfortable, peaceful environment such as their own bedroom, in their own bedroom.

Giving the gift of time.

It is phenomenal to know that over 90 percent of hospitals, maternity and birthing units across the United Kingdom have at least one Cuddle Cot available should the need arise. I am saddened that I have been unable to find a statistic on how many Cuddle Blankets might be available. Donating today, no matter how small, will help us reach our target of £5500 to allow us to gift a Cuddle Blanket to the Dumfries and Galloway Paediatric Team who through dedication and hard work, already have a designated bereavement team set up and ready to coordinate and mobilise the blanket as necessary. Having this special piece of equipment available in the region will give the gift of time to any family who find themselves in the heart breaking position of needing it. Time where their child, once passed would not have to be taken immediately to a morgue or funeral home but instead could stay in a hospital ward or even at home allowing the family to move things forward in their own time, at their own pace.