So often, I work with babies that have various heart defects and more often than not, the babies have feeding problems too. Even after the heart problems have been resolved through surgery or the child "growing out of it", the feeding problems linger into toddlerhood. Why? The number one reason: if you can't breathe well, it is really hard to chew and swallow! This may initially be a poor latch on to the breast or bottle and failure to thrive, because not getting enough ounces during a feeding and burning lots of calories during the feed don't exactly help the infant gain weight. Then, medical staff decide to switch to a high calorie formula that unfortunately has an "yuck" taste, or at least I think that is what the babies are revealing to me. Then, there is feeding tube discussion. Because if the baby can't consume enough calories orally, then an NG (nasal gastric) or (G) gastric tube may be necessary. What a mess! It is a vicious cycle of trying to get the baby to gain weight, especially if surgery is in the future. Then, parents get anxious and the baby "feels" it, which impairs the feeding session even more...uggh! So, then I or another occupational therapist steps in and works with nursing, GI doctors, the pediatrician, and any other person that can help. Often, within a few months things do improve and the baby gets on the right track of gaining weight...yeah! I often recommend strategies to calm the baby so that the suck-swallow-breathe during a feeding is more organized, check out www.sense-ablebaby.com for strategies on calming a baby and the environment.
Once the baby is learning to chew and eat table food, it is often easier for the child to just swallow the food whole than it is to take the time to chew. Many of these children become picky eaters because they know that it is way easier to consume yogurt than it is to chew string cheese! I start out helping the baby learn to use the proper mouth muscles and eat small pieces of food. If you don't work on feeding, you risk a child with an extremely limited diet that may need a feeding tube! Double uggh! However, if a tube is necessary, then so it is. But, feeding skills go backwards unless it is worked on hard! Also, often a swallow study is necessary to make sure the baby doesn't have reflux or doesn't have mechanical problems that would cause the infant to aspirate.
I think that anyone who has a baby that fits the description above, really needs a well-trained occupational therapist (OT), or maybe a speech-language pathologist, to work with the child. OTs can address the other motor delays as well such as not rolling or sitting up on time. So often, babies who have had heart surgery aren't able to lay on their tummy for awhile which impairs rolling and crawling skills. The therapist really needs to communicate with the physician on the plan of care! During therapy sessions, it is a must for the parents to be trained and replicate to the best of their ability what the therapist shows them to do during a feeding. If the baby is medically fragile, a home health nurse may be assigned; in this case, it is a great idea for the OT (or SLP) to work closely with the nurse. Depending upon the nurse's experience with feeding babies, they may need ideas on nipples, positioning, etc.