Teddy was born on the 16th May 2018, weighing 8lbs 1oz. He was born by Caesarean section as I had one previously with my eldest daughter Neave.
The moment I saw him I felt the luckiest Mummy on the planet, he was so perfect from head to his tiny little toes. I breastfed for 2 weeks and he took to it like a duck to water but exhaustion got the better of me and I decided to start bottle feeding. Teddy loved his food and was gaining weight, I was in awe of him, everything was perfect my little family was complete.
Teddy passed all his checks when born and was discharged from the midwifery team at 2 weeks old. I noticed when Teddy got to 5 weeks that he had lost head control, he was no longer lifting his head and would cry and looked uncomfortable when I tried tummy time.
The health visitor came to do his 6-week check and didn’t seem concerned, she told me to persevere with tummy time and try different positions to help him build his head control; I took her advice on board and continued to try. A week later I noticed that Teddy was very floppy, he no longer moved his arms and legs. I took him to the local weighing clinic to speak to a health visitor to get their opinion; as soon as I saw the other babies there I immediately knew that there was something wrong - they were all kicking their legs and reaching out for toys. The health visitor advised I take Teddy to A&E. I was in a state of panic, I called Teddy’s Dad (Liam) explained and he met me there. We were both beside ourselves with worry. They did a range of tests on Teddy; bloods, MRI, everything was coming back normal which showed there was no immediate infection. Teddy was admitted for observation, they explained that one of the blood tests was for genetics and that it could take up to 2-3 weeks for the result. We had no idea what they were testing for until the following day, a day that will forever haunt me. The consultant sat us down and told us that they think Teddy has SMA, what is that? I had never heard of it, will he be able to walk, move? Is there a cure, treatment that could help him? She then went on to explain that it is a life limiting illness and that Teddy had the most severe type (type 1) and that they rarely lived past 12 months. I couldn’t believe what I was hearing, my baby was going to die. I looked at him fast asleep, so innocent, so angelic and my heart broke. How was I meant to go on knowing my time was so limited with him?
That night I barely slept, googling frantically trying to find treatment, a cure, a way to help my baby, with no luck.
The following day we were discharged home. How could we go home back to all the happy memories having just find out such life changing news? We were completely broken. Barely able to function.
We were told that we would get a call in a couple of weeks with the results of the genetic test. Deep down I knew it was SMA, I did all the research, read other families stories. He had so many similarities, a weak cry, tummy breathing, constipation, always turned his head to a preferred side. Two long weeks went by and I got the call off the consultant, the test came back positive. Teddy had SMA, it wasn’t a shock, I knew, I just felt numb.
We made as many memories as we possibly could from this point, we went to the beach, Sea Life centre, got him christened and took loads photos and videos. Cherished every second with him.
As the weeks passed Teddy’s feeding reduced significantly, he was 10 weeks old and only drinking 1-2oz every few hours. We decided to take him to A&E, he was admitted, and the following day had his NG tube fitted. I was gutted I couldn’t feed my baby anymore, something every mother should do and that was being taken away from me.
Everything seemed to get worse from that point, he struggled with his breathing, so they had to give oxygen to help support him. He couldn’t tolerate anything orally, so everything was passed down his NG tube. I completely lost control and confidence in looking after him as did Liam, so we stayed in the hospital with Teddy for 4 weeks. We were taught how to manage his feeds and oxygen. After Teddy had stabilised and with the support from the hospital staff and community nurses we felt confident to go home. We had daily visits from the nurses which helped reassure we were doing a good job and that Teddy was well. We managed to adapt to our new life and kept strong for Teddy, we didn’t want him seeing us upset crying, so we painted on our brave face daily. His smiles got me through every day, it was so rewarding, he began cooing, we were so lucky to hear his beautiful voice, he was becoming his own little person with likes and dislikes.
The community consultant would come out weekly and check there was no deterioration. The weeks passed, and everything was so positive. One Friday she came to see Teddy and explained that his breathing was worse from the previous visit but reassured us that she wasn’t too concerned.
The following day we took him back to hospital as his saturations were low and we couldn’t stabilise them with increased oxygen. We were admitted, he had a chest infection. They immediately started him on antibiotics, a few days passed he was getting worse. He was working harder to breathe and the smiles and cooing gradually became less. He was on constant oxygen and couldn’t tolerate any feed. The consultant told us that Teddy only had a few days left as his left lung had completely collapsed.
We were moved to the local hospice, and in the early hours on the 25th of September at 18 weeks old Teddy fell asleep peacefully beside his Mummy and Daddy. We stayed the following 2 nights with him before they took him to the funeral home. We visited the day before the funeral and I said my final goodbyes.
When Teddy passed away I felt a sense of relief, he was no longer in pain and suffering and was free from SMA. I have been grieving since the day he was diagnosed but nothing can prepare you for the loss of your child. We are so lucky to have had him as our son and he has given us some amazing memories that we will cherish forever. He has left an irreplaceable void in our hearts and is forever missed.