Rainbow walk for Samuel’s Hospice

I had seen a few adverts for the ‘Rainbow run your own way’, to raise funds for Children’s Hospice South West – the group of hospices that Charlton Farm is part of here in South West England. Charlton Farm is where my son Samuel lived for most of his very short life. It is a wonderful place that cares for children with life-limiting illnesses, and their parents and siblings.

I ignored them at first, telling myself that it was too much effort, and I wouldn’t raise much money anyway… then I saw it advertised again and thought that I could easily walk for 5km, and would rope my kids, parents and in-laws in. I admit that I didn’t feel enthusiastic. I was struggling after Samuel’s second anniversary, and didn’t know if I would be up for any challenges.

To win a medal, you had to raise £15 person that you registered. I thought that I could probably give enough for myself and my two kids to do so. In the end, I signed up 6 of us to our family team.

I set up a Justgiving page, setting my target at £100. That was quite high, but I was trying to be optimistic. I met the £100 target within 24 hours! So I set the new target to £200. The money flooded in. 🙂

Alex Dixon is fundraising for Children’s Hospice South West (justgiving.com)

In the end, I made over £650 including gift aid. And I later found out that I was in JustGiving’s top 20% of fundraisers for the month of June. That’s out of thousands of different Justgiving pages.

I couldn’t believe how generous people are. I am so grateful for everyone who gave – including some people that I don’t know. I guess that it’s personal – people know that my family were helped by the hospice. And I obviously have lovely friends and family.

My team also won the prize for best fancy dress – if you know me well, you will have an idea of how happy that made me.

We did the 5km walk around Stanton Park, which is where Samuel’s memorial tree is. It’s a special place for our family. I thought that a team of 6 was pretty good to do the walk, but people kept asking to join us on the day. We had 23 people and 1 dog on the team. It was fabulous to feel so supported by my family and friends. It was such an enjoyable day, and the weather behaved. Not everyone knew each other before the walk, but they all got on well and it was a great atmosphere.

I am so glad that I decided to sign up for the rainbow run your way. I love Charlton Farm and their amazing staff- and hopefully they will be able to support families like mine for many more years.

May is a difficult month, with it being Samuel’s birthday and anniversary of his death – but this was something positive to focus on.

Thank you everyone who joined in and donated.

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When Samuel died

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.

https://www.chsw.org.uk

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.

Samuel’s move to the hospice

Our youngest son Samuel was diagnosed with an unfixable congenital heart defect when I was 20 weeks pregnant, in December 2018. He was born on 1 May 2019.

We had a lovely first day with Samuel and some close family and friends. I was still confined to a bed, having had a planned c-section. That night, a fabulous senior nurse offered to hold Samuel for a few hours, after her long shift, so that Mike and I could get some sleep. I wasn’t able to get out of bed yet, so couldn’t pick Samuel up from his cot or change his nappy. Mike and I were staying in a suite that we had to ourselves, with a lounge, kitchenette, double bedroom and en-suite. It is tucked away from the delivery suite, and used for families who have lost their baby during or soon after labour.

After the nurse had gone, Mike had been sitting in the lounge for a while, and was knackered. I said that I could hold him for a while, so that Mike could get some more sleep. I didn’t think that it would be for long, as I couldn’t walk him round the room, make up a bottle, or anything like that. I think it was about 2 hours in the end, that I held him. He was so settled, that although he was awake a lot of that time, he didn’t cry once. He just seemed to peaceful. Anyone who knows me, knows that this would have been a very different experience for me after my two older kids! I never knew that a newborn could be so content.

At about 5:30 that morning, I texted my Mom, who was staying with Dad and my sister Laura a few minutes away. I asked her if she could come round soon to help with Samuel. About half and hour later she was there.

A nurse came to our room soon after breakfast and said that she was going to remove my catheter, and I needed to get up and have a shower. They wanted me to be able to be discharged as soon as possible, so that we could get Samuel to the hospice. We wanted to make some memories with him, without his whole life being lived in a hospital. The average time to stay in hospital is 3-4 days after a cesarian section.

I had a shower and got dressed without any help. I was very proud of myself. It was painful, but managable. I hadn’t realised that my painkillers from the day before hadn’t worn off yet. I was discharged soon after lunch.

Samuel and I were being transported by the ambulance, so we said goodbye to Mike at the ambulance door, and climbed in the back with a paramedic and a nurse from the hospital. Samuel was in a little baby pod, which they use for transporting little ones. He seemed quite happy for his first and last journey by car. We went over the Clifton Suspension Bridge, which gives great views over Bristol. It was the first time on that bridge for both of us. Soon we arrived at Charlton Farm Hospice. Mike was already there.

The hospice is a precious place, set in countryside outside of Bristol, and just what families need who have a child with serious illness or disabilitiy and a short life expectancy. The nurses, (well) sibling team, volunteers, food, bedrooms, garden and communal areas are just amazing. It really was the lovliest place for us as a family to live for Samuel’s short but sweet life. It is a charity, set up by a couple called Eddie and Jill Farwell, who had two children with life-limiting illnesses.

Here is a link if you would like to donate directly to Charlton Farm, in memory of Samuel:

Donate to Charlton Farm Hospice

We unpacked our bags in the family accommodation upstairs; bustled around the huge estate, met some staff and said hello again to others we had already met, and introduced them to Samuel. Connor and Bethany arrived, as well as our parents, and siblings Laura, Phil, Vince and Anna. And then my body decided that enough was enough. I was in so much pain that I could only curl up in a ball in a chair and whimper. It’s a bit of a blur, but the nurses were great and I got painkillers soon enough. My family enjoyed the privilege of changing Samuel’s nappy as a team task.

Our friends Ryo and James visited us that night. We wanted as many people as possible to visit him, so that they would have memories too. Later, Samuel went a little blue and I thought that he was going to go downhill fast. I was relieved that we had been able to spend a day with him at the hospice, but it felt too soon. He started to get better after a while though, thankfully.

That night was hard: Mike, me, Connor and Bethany were sleeping upstairs, while Samuel was in the poorly kids’ accomodation downstairs.

Every ill child has a large room with en-suite bathroom downstairs. The rooms have CCTV, which is monitored by at least two nurses all through the night, in a comfy area called the Meadow. They are on hand to make sure that the children are looked after while their families get some much-needed rest. For many parents of disabled children, the respite care offered by the hospice is more valauble than gold. It’s the only time they get to sleep through the night, have a stress-free meal, and spend quality time with their well children. The parents can watch a movie in the cinema room without constantly worrying about their child. The siblings can have fun going out on day trips or doing art with the sibling team, while the disabled child is cared for. I can see how it must be a precious thing for every family who has a child with a life-limiting condition.

Anyway, the reality of having had major abdominal surgery the day before, and then rushing around all day pretending that it was ‘just a scratch’ hit home that night. Trying to get out of bed to go to the toilet in the middle of the night was agony. I needed Mike to help me, but didn’t want to wake him up. A couple of hours later, I did anyway as I had a panic and needed to see Samuel right away. I wasn’t physically strong enough to walk all the way downstairs by myself, and knew that I would collapse in pain if I did. So I woke Mike up, feeling pretty guilty. We knew that the kids were safe, so we went to  Meadow to visit our baby.

He was happy, with four nurses seeing to his every wish and taking turns to hold and feed him. He was treated like a little prince: everyone wanted a cuddle. I sat with him for a while, gazing at his gorgeous face and watching him practise his facial expressions. He especially liked to pout. A nurse made me a hot chocolate and gave me a biscuit. I felt much better.

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Samuel’s birth

I said that Samuel would be born in May, and I was right.

My induction was scheduled for Monday 29 April in Bristol, but the hospital was too busy that day to fit me in. They called to ask me if I would be happy to get a call sometime overnight to go in. I didn’t want to wait longer than necessary, so I agreed. We thought that it would make more sense to already be in Bristol for if I did get the call at 1am; rather than trying to wake up properly before heading down the motorway.

So Mike and I stayed at a holiday home on Monday night, one that his parents had rented for the week, in order to be close to the hospital when I got the call. My parents were staying in Bristol too, and my sister flew down from Scotland to be near.

We didn’t sleep much that night. Waiting for a life-changing call is not conducive to a good night’s sleep.

Anyway, the place was nice. And we did not get a call in the night. The delivery suite called at 9:00 to ask me to go in to be induced after lunch that day, Tuesday. It was scary, but I was glad to have a time. We had a little walk around and enjoyed a snack at a coffee shop that was too ‘woke’ for us. But the food was good. Later, we had lunch at a lovely pancake/ waffle restaurant near the university.

It was a nice day out with a massive looming event that got closer every minute. Desperate to meet our baby boy that I was, the birth was something that I had been extremely worried about since the formal diagnosis in January.

I just couldn’t picture how I could have a calm natural birth when I knew that Samuel may well die in the first few minutes after birth. Having had two natural labours, I knew that my body could do it. My mind was the problem. If I could have left my brain at the hospital door before going in, I knew that I would probably be fine. But there you go. Brain-removal wasn’t an option.

After lunch, we made our way to the hospital. We sat in a soulless side room for a few hours, waiting for an induction room. This was the low point of the day: a mixture of boredom, discomfort and worry. Finally, a nurse came and spoke to us. She told us that she had arranged for us to go to a suite that is reserved for patients whose babies have died. Although windowless, it was a much nicer place to be. You could make your own drinks or toast in the kitchen, and had a small lounge area as well as a double bedroom and ensuite bathroom.

Samuel had been breech (bum down) the previous week, and had been easily turned. The doctor who turned him said that there was only a 5%  chance of him turning into the breech position again. I remember thinking that he probably would take that 5% and turn it into 100%. So I asked for a scan  before being induced. It is possible to give birth naturally with a breech baby, but there are risks. I couldn’t deal with any more risks.

The doctor brought the scanner to my suite. It confirmed that Samuel was not head-down and ready for birth. He wasn’t breech either; he was transverse, which means that he was lying sideways. Transverse position is dangerous for the baby and the mum, and you can’t have a natural labour because the baby would get stuck and/or suffer from cord prolapse, putting its life and its Mum’s life in danger. I was told that because of the risks, I wouldn’t be able to leave the hospital. Not really what I was hoping for!

I said that my worst fear about giving birth was that I would have an awful long labour, and then Samuel would die before being born. The obstetrician said that her worst fear was that I would have to have an emergency caesarean section involving a general anaesthetic (sometimes these are required), and then if Samuel didn’t live for long, I may sleep through his entire life,  only waking after he had died.

It was then that I realised that having a planned (and therefore calm and non-dramatic and less stressful) c-section was the best option. The doctor agreed, and she said that they would be able to do it first thing the following morning.

I felt peace as soon as the decision was made. I ‘knew’ that it would be a longer recovery for me, but also that a calm swift birth was the best thing for the start to Samuel’s short life. That said, I totally underestimated how painful a recovery from major abdominal surgery would be.

A kind nurse organised for us to sleep in the suite that night, which was a relief as otherwise Mike would have had an uncomfortable night trying to sleep in an armchair next to my bed, in a small sideroom. Usually the suite is only reserved for families post-birth. This was one of many examples of NHS employees going out of their way to get the best possible care for us, above and beyond their job description or pay scale. I hate to think how much all of my and Samuel’s care would have cost in a country like the US, where the medical system  seems to be ‘provide the best for the richest, and everyone else can sod off.’

I went into theatre as planned, at about 9:00 on Wednesday 1 May. The doctor and anaesthetist had already visited to introduce themselves to me, explain the procedure and answer any questions that I had. The room was full of doctors and nurses, and everyone was nice. A screen was placed across my chest to reduce infection risks, and also stop me and Mike from seeing my insides. I think that I would have enjoyed seeing my insides tbh; I find surgery fascinating. I was rolled slightly onto my left side, while on my back, prepped and anesthetised (by spinal block, similar to an epidural). I have since found out that the angle is so that the prolific waters, when the incision is made, flow out onto the less experienced doctor. The lead obstetrician stands on the drier right side of the patient.

I felt calm.

After a few minutes, the lead doctor took Samuel from the warmth and security of my womb into the loud, brightly lit world. The time was 9:59. Samuel was born. He gave a gentle cry.

He was handed to me, to lie across my chest for some skin-to-skin cuddles. I looked down at his squishy little face and smiled. I noticed that he was turning dark purple. Loads of froth started to pour out of his nose and mouth after only a few seconds. I knew then that he may well die, after only a very few minutes of life.

We had been warned by his cardiologist that he may live between a few minutes and a few weeks. There was no way of telling how long we would have with him.

He was whisked away. Our carciac nurse Jess, who has been amazing throughout, from when we first met her after my diagnosis, was in theatre too, at our request. She took some beautiful photos of Samuel being born, from the active side of the screen. She told us that she didn’t think Samuel would live for much longer. I tried to reconcile myself to this, while feeling extremely disappointed that it seemed our baby would never get to meet his brother and sister, this side of Heaven.

Two things that we were desperate to achieve during Samuel’s life was for our older kids to meet him, and for us to have a photograph of us together as a family of five. Other events were important too, like meeting his grandparents and getting to the hospice, but we knew that he may not live long enough to reach these goals.

It took about 10 minutes for the doctors to attempt to revive Samuel. I couldn’t see him, but the room was very quiet. Apparently he changed colour from  purple to blue to white during this time. I think that he was pretty much dead, or very close to it. I knew that he would have a tragically short life; I just wanted a little longer.

He was resuscitated and handed to Mike. He started to cough. This was a good thing, as it cleared his airways and allowed him to breathe more freely. After a while, he was given back to me to cuddle. I kissed him and said

“Hello Samuel, I am your Mummy.”

Soon after the doctors had finished sewing me up, we were taken to the recovery room. When a woman has a caesarean, she is given some time in the room with her baby, away from the busy maternity ward. Usually her partner isn’t allowed in there. This recovery room had space for two patient beds, with a curtain between them for privacy. The second bed had been cleared out, and a comfy sofa put there instead. There were drinks and snacks on hand. A plastic hospital cot sat in the corner, unnecessarily. Our children, Connor and Bethany were sitting on the sofa, waiting to meet their baby brother.

We got our much-wanted photo of our family of five. 🙂

Both sets of grandparents also got to visit and cuddle their youngest grandchild, as well as my sister Laura, who flew down from Scotland to meet her nephew.

We got many photos. The nurses were lovely and made us all teas and coffees. I was stuck in the bed of course, but the painkillers hadn’t worn off yet. We had lots of cuddles. Some friends from church visited. After the initial scare, Samuel was well and happy. It was a wonderful, peaceful day.

That night, after all visitors had left, we returned to our suite. A senior nurse who works in the neonatal ICU at the hospital, offered to come and sit with Samuel for a few hours after her 12 hour shift had finished, so that we could get some sleep. This is what the NHS runs on, the goodwill and kindness of staff who who stay after their shifts finish; who go out of their way to help; who don’t expect any financial benefit in return.

We got a few hours sleep, and my Mom arrived at 6:00 the next morning to help some more.

We were eager to get to Charlton Farm Hospice as soon as possible, so that Samuel’s entire life wouldn’t be in a hospital. We had visited it a couple of times when I was pregnant, and knew that it would be the perfect place for us to live as a family during Samuel’s life. It is an amazing place.

To be discharged from hospital, I had to show that I could get out of my bed, use the toilet and wash and dress myself.

So at about 8:30, a nurse came to encourage me to get up. I managed to shower and dress without any help, and then, feeling pleased with myself, set about busily packing our numerous bags and so on, naively forgetting that I had undergone major surgery only 24 hours before. I was to pay for that later.

Mike’s parents brought Connor and Bethany back for a visit, and Mike’s brother Phil came too. I was given the good news that I was going to be discharged soon after lunch. Soon, after a few more special visitors, Samuel and I headed off to the hospice in an ambulance, while Mike drove himself and met us there. I worried that Samuel would become ill or distressed during the journey, but he was fine in his little baby pod. We drove over the Clifton Suspension Bridge, which I thought was cool. Samuel was unimpressed.

Another big target achieved: we got to Charlton Farm. Samuel was 28 hours old and doing well.Samuel birth day and me