We lost our little boy Fergus to SMARD (Spinal Muscular Atrophy with Respiratory Distress) in September 2005, he was 18 weeks old.
Fergus was born at 37 weeks +5 days. He was induced early because I had a problem with my liver - nothing serious but it could have endangered him had the pregnancy gone to full term. Fergus was quite small when he was born (4 lbs 14 oz) but apart from this he seemed fine. We stayed in hospital for 10 days because of his weight and the difficulties he had with feeding. After 10 days his feeding had improved and we were allowed to go home. We spent 11 happy weeks at home. Fergus' weight gain was slow but steady and our health visitor, who came every week, wasn't overly concerned. Breastfeeding was difficult but all the other new mums I knew weren't finding it easy either. Fergus and I spent many a happy hour at the various breastfeeding clinics of Cambridge!
At 12 and a half weeks Fergus started to have breathing difficulties. We took him straight to the doctors, and were sent to Accident and Emergency. Fergus never came home again. He spent five and a half weeks in hospital. For the first few hours we thought he had meningitis but tests came back negative. After the first few days in hospital his condition seemed to improve and he was moved out of Intensive Care onto the general ward. Three days later he was back in ICU and we still had no idea what was wrong. Fergus had literally hundreds of tests but the doctors were baffled as to what was wrong. Eventually, it came down to a choice of two. Fergus either had an extremely rare, incurable muscle wasting disease known as SMARD or a brain tumour. How strange to be hoping that your child has a tumour - at least a tumour would have given him a chance. Fergus had an MRI scan to detect whether he had a tumour. For a little baby an MRI scan is a traumatic experience. In order to ensure Fergus' safety during the scan, he had to be anaesthetised and fully ventilated. Once he was ventilated we knew there was a risk that he would never be able to breathe unaided again. The MRI scan came back clear and SMARD was diagnosed by a process of elimination. Fergus' condition deteriorated quickly when he was ventilated and he displayed some of the other SMARD symptoms such as curled toes and fingers – hence the name of his website. Fergus died on 30th September 2005. We received genetic confirmation that Fergus had SMARD about 3 weeks after he died.