For many children the simple act of breathing is impossible. This is a battle young Yaqeen Siddiqi faces every day. Yaqeen was born in September 2010 in Manenberg Cape Town and at the tender age of three months was first admitted to the Red Cross War Memorial Children’s Hospital for excessive vomiting and problematic swallowing. His symptoms were monitored closely and numerous tests were run over several months. Before his second birthday it was confirmed that little Yaqeen had Spinal Muscular Atrophy (SMA), a condition that affects the nerves of the spine and causes the muscles to go weak.
Children with SMA sometimes have trouble breathing or swallowing. In Yaqeen’s case he struggles with both. Luckily for Yaqeen there are machines that children can use to help them breathe more easily and in December he received a tracheostomy, a small hole in his neck, to which a ventilator could be attached as life support. The ventilator is synchronised to sense when he is taking a breath and simultaneously give him an oxygen-filled breath.
The machine not only makes life easier for him but soon he will get a ventilator to take home via the Hospital’s special Breatheasy programme. The Red Cross War Memorial Children’s Hospital is the only facility in sub-Saharan Africa currently offering a Tracheostomy and Ventilation homecare programme. Elsewhere children like Yaqeen are either permanently hospitalised or die prematurely from their underlying illness. Since the dedicated staff at the Hospital are passionate about getting children out of hospital and home where they belong, they are delighted that for the first time in months it will be safe for Yaqeen to enjoy life at home with his family. Since Yaqeen also struggles with swallowing, he has a gastrostomy tube into his stomach through which his family can safely feed him.
Yaqeen has above average intelligence and has a wonderful fighting spirit. SMA manifests in various degrees of severity yet all patients present with muscle wasting and mobility impairment. Some months ago Yaqeen was unable to sit by himself, but has recently taught himself to sit up straight which shows that each case is unique. Children are usually born with SMA disease and while it is sadly incurable, one must never forget that children with SMA are just like other children; they too like to play, use the computer and play video games. Young Yaqeen loves cars and since his disease limits his mobility, his environment needs some adjusting so that he can also play.
The ventilator has been ordered and as soon as it is ready, the training will start for the parents and caregivers. This will then be followed by house visits to make sure the house can accommodate little Yaqeen’s new lifestyle. His parents and his grandmother, who is a nurse, will be taking care of him. While the life expectancy of children with SMA is uncertain, the better care Yaqeen receives the better his chances of a longer life.
Read more about the Breatheasy Tracheostomy & Ventilation Homecare Programme