Having tried unsuccessfully for a long time to have children, as many couples do, we were beyond excited when Sarah fell pregnant in early 2015; and we had an encouraging twelve-week scan. Life was beginning to settle down, with Sarah securing a permanent position at NHS Fife as a consultant orthopaedic surgeon, myself securing a fantastic job at the University of Edinburgh’s Data Lab, a new house being built in Kinross-shire on the stunning surrounds of Loch Leven, and our cats coming home having been abandoned the year before whilst we worked in New Zealand.
Careers, a long-term location to call home, and the beginnings of a family. But… on 4th May 2015 we had a twenty-week scan at the Victoria hospital in Kirkcaldy. This showed, with great precision, that Sophie had Hypoplastic Right Heart Syndrome; a rare and severe congenital heart defect that occurs in just 1 in 60,000 births. Around one baby every 16 months in Scotland. Our euphoria of previous months had taken a serious bruising, and we had a five month build up to Sophie’s arrival that was nerve-racking and awful.
The support we had from NHS Fife and NHS Greater Glasgow and Clyde over these five months was phenomenal. Dr Graham Tydeman, consultant in obstetrics and gynaecology, NHS Fife (retired) was particularly helpful and empathetic. With the odd catch-up around the Loch Leven Heritage Trail, Graham became a good family friend; and was the very first visitor to give Jessica (our rainbow baby) a cuddle when she arrived safe and healthy at the Vic on 12th October 2016.
Back to the 2015 timeline. Sophie arrived by caesarean section at 7.04am on 14th September 2015, at The Royal Hospital for Children in Glasgow. We were far from home by preparation, knowing that she would be going straight into intensive care ,surrounded by the intensivist and cardiac expertise required. The next day Sophie had had a cardiac catheterisation procedure, which did not go at all well.
From this early setback, Sophie fought hard for six weeks through seven surgical procedures. Sophie had a double inlet single ventricle heart, pulmonary atresia, and transposition of the great arteries. In other words, half a heart, plus other complications. The Paediatric Intensive Care Unit (PICU) team often likened Sophie to a Rubik’s Cube, each turn presenting another challenge as they worked out what to prioritise to prepare her for a key operation that would finally bring her home. This operation was a “BTT shunt” (Blalock–Thomas–Taussig), which increases blood flow to the lungs.
On the 17th October, when Sophie was almost five weeks old, we got the night time call that all PICU parents dread. Sophie was not doing well and a decision was made to put her on ECMO. ECMO stands for Extracorporeal Membrane Oxygenation, and it is a specialised life support machine, a heart and lung bypass system. It was the most frightening set up of equipment we have ever seen, and it needed very specialist staff support.
When we raised funding in 2015, half of the £25,000 donated went to support the ECMO service in Glasgow. What we raised was an atom in the ocean for what the NHS need, but it was something, and gave us meaning to hold on to in a very dark time.
I had intended to write here that Sophie came off ECMO and generally stabilised. This is how I remember things. But having found a Facebook post from the 22nd October 2015 (three days before Sophie died) I now realise that I had become so sensitised to the situation that I thought things were fairly stable, perhaps relatively. But bad circulation, collapsed lung, physio, chest drains, and an open sternum all happening over a few days is not stable by any stretch of the imagination. I think we had been convincing ourselves that Sophie could and would recover. But I am not being critical here; even now with calm hindsight, thinking positively was the only thing, and the right thing, for us to do then.
But the reality was that Sophie was neither growing strong enough or big enough for the BTT shunt operation to be carried out. On the 25th October 2015 we were jubilant over achieving the major milestone of getting Sarah’s milk in to Sophie via a nasogastric tube. Although just running at 1 millilitre per hour, it felt like (and was) a major breakthrough in what we knew was Sophie’s number one battle. Getting stronger and bigger. Expressing breast milk had been a valuable crutch for Sarah too. You cannot underestimate what this meant to a first time mother who could do very little else to help her baby. This was the first time Sophie had taken milk having only received minimal intravenous nutrition fluids for five weeks. Such was our jubilance that we headed out for a celebratory lunch at the Steam Wheeler, Glasgow’s cheapest daily carvery, just a few minutes from the hospital. Little did we know that in a few hours Sophie would be gone. At 5.55pm that evening Sophie had a cardiac arrest and could not be resuscitated. This is the last picture of Sophie, taken at 10.20am that day.
Our horse chestnut tree at Loch Leven. When Sophie was two weeks old Sarah and I were sent to relax and distract ourselves whilst she was taken in to theatre for a lengthy procedure. Walking around the hospital grounds I picked up some conkers and put them in my pocket. Holding on to them with the notion they were a similar size to Sophie’s heart. We collected a few more, did the float test to choose the viable ones, and planted them in a germination tray which we kept in our bathroom at Crossbasket house. We planted them in our garden as a dedication to Sophie. I was immensely proud of my horticultural husbandry and prowess, only to discover that conkers are exceptionally hardy seeds that will survive and thrive in the harshest of conditions.
That said, Sophie’s tree is now well established in our garden, standing at almost 3 metres tall, and is a comfort to watch getting stronger and bigger every year, just as Sophie’s two sisters are.
Thank you for reading. Please consider donating to Little Hearts Matter, whom you will see referred to in the picture above of my email from 6th May 2015 when we had no idea what Hypoplastic Right Heart Syndrome was.
www.justgiving.com/page/sophiemitchell
