Tube feeding may be considered for a variety of reasons. Some babies have such severe respiratory problems that they lack the stamina to suck and swallow. Difficulties with swallowing and/or breathing may cause a baby to aspirate or take milk into the lungs rather than the esophagus and stomach. This becomes quite serious causing a pneumonia which we are trying so desperately to prevent in the child with SMA. For example, Wyatt began to fatigue during his feedings and, over a brief period of time, stopped gaining weight. He also began gagging and choking when he ate. We decided it was time for tube feeding and opted for a gastrostomy tube. The decision to pursue tubefeeding, as well as the type of tube chosen, is an extremely personal one. We suggest discussing this decision soon after your child is diagnosed. This will allow you enough time to consider the options available and contemplate your decision prior to its actual medical necessity. Work closely with a Pediatric Gastroenterologist throughout your child's journey.
Syringe Tube Feeding
Even though Wyatt progressed from bolus or syringe tube feeding to continuous pump feeding, we found that he still needed and enjoyed oral stimulation. He readily took to a pacifier and often enjoyed suckling at the breast. This is also very important to continue in helping to maintain normal developmental patterns in the absence of oral feeding. Watch your baby for signs like lip smacking, or sucking motions as indications for desired oral stimulation.
Each infant stricken with SMA, Type I is different. We have included this only for your information. All medical decisions should be made in conjunction with your doctor.