Problem Solving: Infants with congenital heart disease

Question: “I recently evaluated a one month old baby with ASD and VSD for a feeding evaluation. His mother reported coughing during meals and some reflux. He bottle and breast feeds, uses a nipple shield for breast feeding. He has a strong suck but is disorganized. Sucking bursts vary from 25 to 7 to 15, etc. Liquid extraction is good. He did exhibit some reflux during the feeding but no coughing. I am going to return for a second feeding next week. I have been researching the effects of ASD and VSD on feeding and have found that they tend to be poor feeders. I am wondering if this is because of the breathing difficulties they tend to have. He did not exhibit any breathing difficulties during the feeding. Has anyone had experience with this diagnosis? His reflexes are good. He does have an upper attached lip frenulum with some tightness of the upper lip. He appears to have a good latch and has a non-nutritive suck although he really doesn’t like his pacifier.”

Answer :
Infants with an ASD and/or VSD typically do have increased work of breathing and tachypnea. These compensatory behaviors may be overt or subtle. It is also challenging if one is not used to looking at these types of behaviors to necessarily “see” them.

His long sucking bursts are highly likely to be adverse. They keep him from stopping often enough to deep breathe. Deep breaths which re-saturate the blood with oxygen are critical for babies with heart defects. Long bursts of sucking without deep breaths then deplete his respiratory reserves, causes him to all of a sudden need to inhale (even if he is in the middle of a swallow) and can result in the coughing you report. Unfortunately, most events of aspiration are silent in infants, as the cough reflex is unreliable, especially at his age, so he may be compromising his airway more than is overtly apparent.

It may help you to gain support for assessing respiratory work during feeding (and at rest) in infants to pair up with another SLP who can look along with you at the cardiorespiratory symptoms that he may be displaying.

In the meantime, I’d switch him to a slow flow nipple, feed in swaddled sidelying to reduce work of breathing, avoid any prodding or passive manipulation of the nipple to “prompt” him to suck if he stops to breathe, and provide vigilant external pacing to limit the number of sucks in a row based on his “continuous feedback” from moment to moment.

To help you regarding what “cues” signal a need for a pause from sucking, and best supportive interventions, see: Shaker, C.S. Nipple feeding preterm infants: An individualized, developmentally supportive approach.1999. Neonatal Network, 18(3) 15-22. Even though the focus in that article is on preterms, it provides a good explanation of infant cues (signs of stress versus stability) that may be observed secondary to the cardio-respiratory work which is part and parcel of feeding.

Infants with an ASD or VSD are likely to become uncoordinated and exhibit respiratory fatigue, which can increase as the feeding progresses, due to the aerobic demands of feeding. It will be important to protect the infant and to help parents understand that slowing him down in the long run will better help him “go the distance”

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