Jack William was born in the early hours of Thursday 25th May 2017, weighing 8lb 2oz, by water birth. He was little brother to Daisy who was almost 3 and he completed our family.
Jack passed all his checks and was deemed to be ‘healthy’.
The first two weeks were amazing. We wanted to be at home, the 4 of us with our families so didn’t really have any other visitors. Jack was so chilled, we just thought he was a typical lazy little boy and we were lucky!
At 2 weeks old, he completely changed. He started crying non-stop; I took him to A&E. We sat in the waiting room with him crying for hours until we were finally seen and told he was being over overfed. We started managing his feeds better and he improved but was still very unsettled. Nothing made him happy. I was ringing the health visitor constantly; everyone kept saying it must be colic, but he wasn’t pulling his legs up. I just knew it wasn’t that. The local nursery nurse came over and agreed something was wrong, she didn’t know what but something and to go to my GP. We went to the GP who said Jack seemed fine; eyes, ears, throat etc but would refer us to the hospital for a rapid access appointment just to put our mind at ease.
The next day Jack seemed much happier, but the hospital called and said to go up right away. We weren’t going to bother as he was ok now but seemed silly to waste an appointment as it had been given so we went along. Jack was lying in a little cot in the assessment unit on the children’s ward and a consultant came to see him. She was pulling his limbs up and down and just dropping them, asking if he was always this floppy? She was very concerned and asked other consultants to come and take a look at him. Had he always been this floppy? We didn’t know? We hadn’t noticed. It was really really hot, he was 2 weeks old…
We desperately searched photos and videos for proof that he hadn’t always been floppy but couldn’t find any. In hindsight, there had never been any anti-gravity movement.
The consultant told us that she would need to run some tests and that it was almost definitely neuromuscular but never said what she was thinking. It was mentioned they wanted to rule out Spinal Muscular Atrophy, a genetic condition that is fatal for many babies before the age of two. We were certain it couldn’t be that. Jack was breathing and feeding on his own. Surely if he had the most severe form of this he wouldn’t be doing these things?
This was, for me, the worst moment of it all. Knowing something was wrong but not knowing what.
We were referred for physio. We hoped that, at best, he just needed extra help to build his muscles up and whilst he may be behind his peers, he would be ok. I was googling constantly trying to find any answers that I could.
Frantically googling ‘hypotonia new born baby’, I found a story written by a Mum in 2008. Her little boy Lucas was fine at birth then became floppy. He was diagnosed with SMA Type 1 at 8 weeks and passed away almost exactly 2 months later. I read this story and realised that everything she said was the same for us. Jack lacked the Moro reflex (startle) and had exaggerated breathing. Jack was Lucas but 9 years later. He had SMA Type 1. I knew it! I didn’t need the official results.
I sent the story to my husband Chris and our Mums; I told them this is what he had, and he was going to die. They all said ‘Sarah stop winding yourself up, you are coming up with the worst-case scenario. Just wait for the results!!’. But I knew. I just sunk further into hell, by myself; everyone around me was being so positive. Chris was our calm in the storm. He never ever waivered. So composed and so strong throughout. I couldn’t hold it together at all and was just creating further concern for everyone around me. I couldn’t snap out of it.
Two torturous weeks had passed since Jack had his blood tests.
On Sunday 2nd July, Jack smiled for the first time.
I’d been out for a few hours that day but when I got home Chris said that Jack had a super high temperature of 41. As he was being investigated for a neuromuscular condition we didn’t want to take any risks so back to A&E we went. Again, by the time we got there his temperature had come down with nurofen so we spoke about just going home but they called us in. Triage did all the usual checks; his temperature was ok but as we had told them he had a temperature of 40+ they had to do blood tests. We were moved into the resus room then taken up to the children’s ward for bloods. Only one of us was able to stay so Chris stayed because I was in no fit state to look after myself let alone our baby boy. He called me at 1.45am to tell me that Jack had septicaemia and then again at 2.30 to say he had meningitis and had had a lumbar puncture to confirm this.
I was relieved!! This is why he was floppy! It must be!! But no, it was all the wrong way around. There was no link to show it was all related it was just horrendous bad luck!!
Jack stayed in hospital for a week and was allowed home for the last few days where community nurses came to give him his antibiotics.
On 12th July, it had been 4 long weeks since the initial tests and we knew the results were due. It was also the last day Jack needed antibiotics, so we were asked to go in for him to have his cannula removed. Once this was done we were asked to walk around to the assessment unit. Chris was carrying Jack, I followed along with our Mums. There were too many people in the room for it to be good news. All the nurses were looking at us sadly as we walked by. We sat down, and the consultant said he had tested positive for Spinal Muscular Atrophy Type 1.
And just like that our lives fell apart. It wasn’t a surprise.
I knew what this meant. My baby was going to die and had a time limit of approximately 4 months. He was almost 2 months already.
We were told there was nothing they could do, and we would be referred to Great Ormond Street Hospital.
We were seen at GOSH 6 days later; on our daughter Daisy’s 3rd birthday.
We had a palliative care plan put in place. We had a DNR put in place. We had the Palliative Care Team from GOSH, our local palliative care specialist nurse who visited regularly, and the local community nurses on call. There were 7 weeks between diagnosis and Jack passing away and I can honestly say that the care we received really was incredible. Great Ormond Street and our local palliative care nurse had seen SMA before. They knew what to expect, they knew the condition. There were no questions they couldn’t answer, and we really cannot thank them enough. In an extremely unlucky situation, we were lucky enough to be referred to one of the best children’s hospitals in the world.
I seemed to get it together after diagnosis. I knew what was going to happen, that Jack wouldn’t be in our future and we now needed to make every second count. I made lots of friends online who had been through the same. Just talking to them helped. It still does. They had survived this. Jack and I also met up with a lovely lady, Carly, who had been through the same with her little boy, Reggie, 4 years earlier to the same condition. She became my rock.
Thankfully Jack remained well, breathing and feeding by himself until 12 weeks. We were able to take him swimming, to the zoo, the sea life centre, have him christened etc.
At 12 weeks, Jack lost his swallow so was given an NG tube for feeds. Over that week he was fairly unsettled to a point that we were now giving him small doses of morphine. We knew that his swallow going was the start of the end. We expected him to get a chest infection and decline from there. We initially wanted to be at home for the end but changed our minds about going to the children’s hospice for end of life care and decided that when the time was coming we would go there to be together as a family.
On Sunday 27th August, our friends and family did a big sponsored walk to raise money for The SMA Trust. I wasn’t going to go, I didn’t want to see anyone. Chris did the whole walk with Daisy and our family and friends. Me, Mum and Jack met them towards the end and went to the local pub for a while after. It was actually a really lovely day. Everyone got to see Jack and have a cuddle / photo etc. I was so glad I took him down.
We got home that night put him to bed as usual, still wearing his #TeamJack baby grow. He slept right through, beside me. In the morning when he woke, I picked him up, gave him a cuddle then propped him up on my pillows to sort out his feed. He was quite unsettled, so I woke Chris and said can you just hold him whilst I sort this.
When I was done he passed Jack to me and said, ‘Sarah is he breathing?’ He wasn’t.
He was blue. He had gone. Just like that.
I won’t pretend that life after losing Jack is easy, it isn’t. Chris and I switched roles. Chris hit rock bottom and struggled to cope with the loss of Jack and the guilt of being unable to save him in those final moments. I had prepared myself for this outcome before we lost Jack and had become the calm in the storm to support my family. Again, GOSH provided great support for Chris, who received counselling which has really helped him.
Writing this today, I want anyone else going through this to know that we are ok. I still have my bad days that hit me out of nowhere, but life has to go on and we live our lives with Jack in our hearts every day. Not a moment goes by where I don’t think of Jack, but we have to move forward and live our lives like Jack would want us to. We have raised close to £50k for charity in Jack’s memory and I get a great sense of purpose from being able to try to offer advice and support to other parents going through the same situation and have made so many good friends from doing so.
We had 13 weeks and 3 days with our beautiful boy and although it was short, he was worth every single second!