Jake Morley-Towner
20th March 2006 - 7th November 2006
 I had a lot of problems during my pregnancy with Jake, I had a lot of back pain and SPD (Synphysis Pubis Dysfunction), most of my pregnancy I spent in crutches which wasn't easy running around after 3 other lively children and my husband working nights.
Other than that my pregnancy was normal, thinking back though Jake didn't seem to move around a lot although when he did, he liked to use my bladder as a trampoline. Jake was born 2 weeks late and I had to be induced, it was a 2-½ hour labour and he was born at 2.23pm.
I was elated, I had thought I was having a boy and I did. For the first time out of all my pregnancies I felt an overwhelming love for my little boy, he had a bit of a squiffy nose but he was the most beautiful thing I had ever seen (I'm biased though). I was surprised that he only weighed 7lb 1oz as my previous son had weighed 10lb 6oz. I remember vividly being on the ward after everyone had gone home, Jake lying on his chest and holding his head upright staring into my eyes, the midwife was shocked as she had never seen a baby, only hours old, do this.
All Jake's checks went well and everything was normal, I didn't even seem to get postnatal depression, I was just so happy. I tried to breast feed and managed sort of successfully for 3 weeks but it became very tiring as he wanted to be on all the time so I started him on bottles during the day and breast at night, this worked well until he was about 4 months old and didn't need to be fed at night anymore.
As we increased his bottles he started having problems feeding and wasn't gaining weight, my other 2 boys had put on a pound a week and he was gaining a matter of ounces, some weeks his weight just maintained, I thought this was a bit unusual so I explained he kept pulling away from his bottle when he was feeding and screaming, he was hungry but couldn't feed, we came to the conclusion he had reflux and we changed his formula to SMA Staydown, Jake fed better and started to put on weight again, not much but it was better.
I had thought his physical development was a bit slow at around 3 ½ months; he hated being on his tummy and wasn't reaching out for things too well. I looked on the Internet and I was convinced it was failure to thrive due to his reflux, so I asked the health visitor, she checked his weight and length and told me there was nothing to worry about, he had started to roll over too but he still didn't like putting any weight on his legs and hold his head up.
I really started to worry when he was about 4 months old, a woman had come round to do a survey and as I got up to answer the phone I left him lying on the sofa, the lady said I'll make sure he doesn't roll off, and I said oh don't worry he won't he can't roll yet. It dawned on me then that he wasn't yet rolling, he hadn't improved, in fact he had just got worse, he wasn't lifting his head as he had done when he was born, he wasn't bearing weight on his legs, if he was just behind, it wouldn't be a bit, it would be a lot. That night I lay next to him on the bed in tears. I thought maybe it was my imagination and my mind was working overtime so I again raised my hopes.
That evening I was on the phone to my mum and my mum expressed concern about his development, as did my dad, my dad wouldn't notice a bomb hitting the house so it was really unusual for him to notice and mention his concerns. I really did worry and sure enough took him to the doctor's the next day 15th August 2006. She seemed to be really concerned about his lack of muscle tone, normally she would say it's nothing to worry about but we'll get it checked out, just to make sure. This time it was, I am really concerned, I will refer him to a community paediatrician to keep him out of hospital as much as possible and will send the referral off now, I'll fax it over as soon as you have gone. I was ok with that, it wasn't my imagination, she then phoned 3 times during the course of the day to let us know what she was doing, the 3rd phone call was to let us know we had an appointment the following week.
We took Jake for his appointment and the paediatrician was concerned that she couldn't seem to find his reflexes and got us to bring him in for blood tests the following day. She explained that his body could be withholding nutrients, or it could be any of the muscular dystrophies or muscular atrophies. We came in the following week and muscular dystrophy had been ruled out but spinal muscular atrophy and pompes disease hadn't yet. I came home and looked them up, I hadn't realised that it could be so serious, I read the prognosis for both was approx 2 years of age. I looked and saw they were genetic, and thought it couldn't possibly be them we had no history, besides we had 2 healthy children together, surely we would have known by now. I tried to convince myself it was something else.
We got a phone call 2 days later 31st August, they had the results and could we come and see them tomorrow.
We went in and saw the paediatrician and she told us he had Spinal Muscular Atrophy type 1. It was a strange sensation of being relieved to know what was wrong with him and the shock of knowing that my baby was going to die. She explained a lot of the condition to us and told us she would arrange open access at the hospital. I told her he had a cough, she checked his chest and it sounded fine but explained he would be on low threshold antibiotics and put him on a course to start immediately. When we left there I broke down, I don't think I cried so much in my life, my beautiful precious baby was going to die. Some time later, I started to think positively, he'll see Christmas and his first birthday, we can do things with him that we probably wouldn't have done, we'll make the most of the time we have with him.
I went home and read up more of the condition, I was going to be positive about this, only to read that 80% of babies die before their first birthday. I read through stories such as this and a lot of babies died at around 6 months, my world came crashing down again, I cried myself to what little sleep I had that night.
The following morning Jake's cough had got worse and he was struggling to breathe, as it was a Saturday I couldn't take him to the doctor, so I called NHS direct, I explained about his condition but no-one knew about it. When I got off the phone Jake became suddenly worse, he started to go blue and floppy, so we called the ambulance, I told the paramedics about his condition and they put him on oxygen, at this point I still didn't fully understand the severity of this.
He was taken to hospital. My mum, dad, sister and eldest son were on holiday in Greece, I told them I wouldn't let them know anything until they got back and I didn't. They got back to find Jake was in hospital. As Josh, my eldest, was starting a new school and I had to somehow tell him Jake was going to die, I thought I would leave it a couple of weeks to let him get settled in. That all backfired though when he visited Jake the day he came back and Jake was again struggling to breathe, he mentioned he was worried that Jake was going to die and I wasn't prepared to lie to him, you could hear the hurt he was feeling when he cried and this was probably the most difficult thing I had to do. The next day we got all the children together Josh (8) Anna (4) and Matthew (3) and explained to them all about Jake's condition. We told them Jake was an angel but he didn't have his wings yet, one day soon they will grow and he will have to go to heaven. I answered all their questions as honestly as possible.
I stayed every night at the hospital with Jake; the nursing staff were absolutely great. We found that we had friends that we never dreamed of and everyone rallied round to help us. Friends and family, I don't know how we would have coped without them, especially in the first few weeks.
Jake was in hospital for 3 weeks, during those weeks we learned physio, suctioning, oxygen control and how to read a sats monitor. Finally he was allowed to come home. Everything was fine until 3 days later, he was struggling to breathe again, the doctor just gave a courtesy call and suggested that we take him back into hospital, this time it was much worse, he was in an oxy box being pumped through 90% of oxygen plus what he was taking through his mask.
On 22nd September we were told he may not make it overnight so we got him baptised there and then, I spent most of that night staying up with him. He was very red but not hot, blue around his mouth and nose, we were [convinced] that his body was retaining carbon dioxide and this could be fatal but they didn't want to put him through a blood test. He survived the night, the next day he was happy and chatty so we still had his blessing on the Sunday. Paul, my husband, was convinced Jake would die on his birthday, which is 25th September, we were on tenterhooks that day but he was ok. On 24th September he had an NG tube put in help maintain his weight and we learned how to feed him, he perked up quite well and he even came off the oxygen. We had decided to bring his Christmas forward and I really wanted for him to paddle in the sea, as we couldn't take him there our friends brought it to us (they collected seawater and sand in a bowl) The hospital said they would allow him home again, but our other children had hand, foot and mouth disease, so I took him out for the day instead, this was really enjoyable. I took him shopping with me and tried to keep things as normal as possible.
Eventually he came home on 14th October and we got him on a pump feed rather than boluses, this was so much easier. He was a pageboy at my brother's wedding and I took him out and about. We had planned to go on a holiday nearby during the half term week, but we all came down with bad colds and chest infections so we couldn't go.
Jake had his Christmas on 5th November, he had lots of light and sound toys and he got a swinging chair, he really enjoyed it.
On Monday 6th November he was really happy, he kept on smiling at me and his eyes were following me everywhere, he was in such a good mood all day. Paul put him to bed that night, as he had a cold we had to put him on just a tiny bit of oxygen to keep his sats up. I woke up at 2 am, I panicked because I couldn't hear anything and then remembered his alarm would go off if there was a problem, I checked his monitor and his sats were good, 98%. I calmed myself down and went back to sleep.
I woke up with the alarm going off at about 6.15, I leapt out of bed, Jake's sats were about 70%, I turned his oxygen up to 1.5 litres, and picked him up, he was blue and clammy, I yelled for Paul who was still asleep and he got his suction unit, I suctioned and suctioned but nothing was clearing, there was constant mucus coming up, we phoned the ward to let them know we would be on our way up, and then we called an ambulance, we brought him downstairs and laid him on his side on the sofa. While I was out waiting for the ambulance, Paul yelled for me, Jake had fallen unconscious and his sats were only 4%, he was only just breathing, I picked him up and gave him mouth to mouth, he came round a bit and looked at me, we had signed a do not resuscitate form so I was going against that. His breathing was gradually slowing and as the ambulance turned up he took his last breath. Jake died in my arms. I and Paul and the paramedics decided we shouldn't do anything more as we would only have to go through it again and it was only fair on Jake. I was in a daze all day but it really hit me that night.
Jake was a really happy boy who somehow touched everyone who met him, I have always seen him as a blessing in my life and am glad and thankful I had those few short months with him, I am proud to have been his mum and his dad feels likewise. He taught me so much in those few months and we will all miss him greatly.
See Also
Inspirations page: Our Little Jake |
