Bethan was fed through a gastric tube from the age of 4 months.

It was very clear throughout Bethan’s life that there was a clear relationship between feeding and breathing. As SMA children breathe mainly by using their abdominal muscles (tummy breathing), they find it very difficult to tolerate large volume of fluid. Striking a balance between comfort, quality of life and maintaining minimum fluid levels was extremely difficult for us.

Bethan’s nutritionist recommended volumes of milk which Bethan had no hope of tolerating. It was just trial and error, adjusting times and volumes to maintain Bethan’s weight, minimise reflux and ensure she was comfortable.

 At the age of 8 months Bethan was tolerating 80ml of milk during one feed every 3 hours throughout the day with no feeds overnight. As Bethan’s illness progressed, we had to reduce volumes and increase the frequency. At 9 months we started using a feeding pump which enabled the milk to be provided and at a slower rate over a longer period of time. This proved to be very successful.

At 14 months Bethan could no longer tolerate feeding off the BiPAP. The BiPAP allows the lungs to inflate properly and less pressure is placed on the abdomen and Bethan tolerated larger quantities of milk extremely well whilst on the BiPAP. Bethan’s heart rate would be high whilst being fed ff the BiPAP, however the heart rate reduced to normal when being fed on the BiPAP.

Whilst Bethan was unable to swallow, BiPAP allowed her to taste food without it going down her throat. Strawberry yoghurt and chocolate mousse were among her favourites and the food would be drawn out of her mouth.

At 2 years, regurgitated food was sticking in Bethan’s throat and on back of tongue affecting airway and was requiring regular clearing. 

We are in no doubt that the BiPAP ventilator minimised discomfort of feeding and minimised reflux for Bethan.