We knew that Samuel would not live for long. We found out at my ‘normal’ 20 week scan, which happened to be 3 days after Christmas 2018.
We knew that he would never talk, never take his first steps, never start nursery or school.
The cardiologist told us that the average life expectancy for a baby with his congenital heart defect was 2 days. I hoped for a few more, so that he could meet as much family and friends as possible. Of course, any baby can die during labour, so there was that awareness too.
We and other Christians prayed for a miracle, but myself and Mike both felt that he was never destined for a long life. We would have gladly taken it, of course. Why didn’t God heal our Samuel? Only He knows. I do know that Samuel’s life is just as valuable as someone who has lived to 100, or climbed Mount Everest or became a millionaire. Every single person is loved by God, and that is not dependent on their looks, education or achievements. I do know that thousands of innocent babies and children die around the world every day, from disease, war, poverty, illness, accident, unknown causes and parental choice. So he is definitely not the only child currently chilling in Heaven. I miscarried before Bethany was born, so he has an older brother or sister with him.
When I was about 6 weeks pregnant, and then again at 17 weeks (after completely normal 9 and 12 week ultrasounds that didn’t show any problems); I did hear clearly a male voice in my head saying “There is something seriously wrong with your baby.” I hadn’t been thinking or worrying about my pregnancy at the time either. So I had some warning.
Thankfully we were in a lovely hospice for most of Samuel’s life, called Charlton Farm.
We had as peaceful and enjoyable a time with him as we could. And it wasn’t just that Samuel’s every need was met. We were looked after as a family too. They were a real blessing, and we will be forever grateful to them.
I remember the last full day of his life, Saturday 11 May 2019. It was the weekend, so Connor and Bethany were with us again, after a few days at school (staying with Mike’s parents.) Being a Saturday, more family were able to visit, which was great. My sister in law, Mary, came to visit us in the morning. My sister, Laura, who had visited from Scotland ‘for just a few days’, more than 2 weeks before, was living at Charlton Farm with us, mostly to look after me as I had had a c-section and was fairly immobile. She was an absolute angel to us all, and I can’t thank her enough for being there for us. My brother Vince, and his fiance Anna visited us that afternoon. So Samuel was blessed to have all of his aunties around him on his last well day.
We went for a walk up to see the horses on the farm at the top of the steep hill with Mary and Thalia (Samuel’s nurse for the day), that morning. It was a warm sunny day. The kids played on the very posh private school nearby’s outdoor play equipment. We noticed that Samuel was struggling to poo, which is a sigh that we had been warned about. It was because his heart was failing, and the digestive system is the first thing that struggles to work due to reduced oxygen. He could still breathe fine on his own and wasn’t in any pain.
That afternoon, Vince and Anna arrived. We had a lovely time sitting in the garden while Samuel slept in his pushchair or was held by everyone in turn, and Bethany played in the nearby sandpit. Everything felt so relaxed and happy. I thought at the time that this was going to be a happy memory to cherish. You don’t always know what you will remember, but I just knew this time. Samuel was ok, if sleepy and not hungry. The exact opposite of his brother at that age!
We knew that his time was probably coming to an end, but didn’t know how long it would take. And there is always hope that you will be given a few more hours and days.
That evening as Mike and I watched a film, strangely I can’t remember what it was, we could see that Samuel was starting to physically deteriorate. He was still comfortable and didn’t need any interventions, but one of the hospice’s regular doctors made the effort to came to check on him anyway at about 11pm, long after she had gone home for the day. A trick of his was to creak at you almost like he was trying to communicate. He was also a surprisingly alert baby who stared at people as though working you out. He got more creaky and more pale. We felt calm, but there was sadness as we knew that we would have to face his death soon.
We told the two nurses on night duty to wake us up if there was any concern about his health. I was downstairs in his room, as the trip to the bedrooms upstairs was too tiring and I wanted to be near to Samuel at night. My sister was in the next bedroom. At about 2am, nurse Sophie woke me up to say that they had tried a little medicine, but he was quite poorly. I had a cuddle, and after a while he picked up a bit. About an hour later, they asked if they should wake Mike and the kids, as Samuel was struggling. I agreed, and soon Mike, Connor, Bethany and Laura came into the room. He was very pale and we told the kids that he was going to die soon. The nurses had given him some medication to make him more comfortable. We had some cuddles, and all said goodbye to him. He was in my arms as I sat in bed when he died. It was all so calm and quiet. I think that he had the best death that anyone could hope for.
At about 4am, we had said our goodbyes and the nurses made us all a hot chocolate while we sat in the nurses’ station where Samuel had spent many nights in a nurse’s or my arms. There are sofas and a big window. We watched the sun come up.
Samuel had a happy life and a peaceful death. He was hardly ever in a cot or pushchair as everyone fought over cuddling him. He made such a big impact on our and many other people’s lives in his 11 days on Earth.
We are sad, and sometimes angry; and it is incredibly unfair. We will never stop grieving our son. But what happy memories we have with him. He has helped me to think about life differently: about what is really important.