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Evaluation of an Outpatient and Telehealth Initiative to Reduce Tube Dependency in Infants with Complex Congenital Heart Disease

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Abstract

Infants with congenital heart disease (CHD) often require supplemental nutrition via tube feeding, even after corrective surgical repair. The need for tube feeding can persist months after discharge home, and outpatient weaning from the tube can be a slow and difficult process. Lack of consensus exists in the literature as to the best approach to this challenge. We describe a single institution’s initiative to decrease tube dependency after discharge through an intensive, telehealth-centric program for children with CHD. Of 16 children aged 1–26 months, 94% were able to be successfully tube weaned at home, with median time to tube-free of 12 days. No significant weight loss was noted during or after the wean process. Longer tube wean time was associated with older age at onset and comorbid genetic syndrome. Our telehealth-based intensive tube weaning program was successful but required a multidisciplinary team, targeted pre-participation patient evaluation, and frequent communication.

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Author information

Authors and Affiliations

  1. Division of Nutrition Therapy, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH, 45229, USA

    Megan Horsley

  2. Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Garick D. Hill & Elisa Marcuccio

  3. Division of Speech-Language Pathology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Sarah Kaskie & Maureen Schnautz

  4. Department of James M Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    James Brown

Authors
  1. Megan Horsley
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  2. Garick D. Hill
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  3. Sarah Kaskie
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  4. Maureen Schnautz
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  5. James Brown
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  6. Elisa Marcuccio
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Corresponding author

Correspondence to Megan Horsley.

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Appendices

Appendix

Medical readiness for cardiac tube wean program:

Medical Readiness

Single-ventricular physiology

  • At least 2-week post-bidirectional Glenn procedure or demonstrated hemodynamic stability in interstage period

  • Adequate weight gain for age with supplemental tube feeds prior to weaning (see nutritional readiness below)

  • Safe swallow: definition varies center to center, our speech therapists recommend a VSS clear of aspiration

  • Echo criteria: no greater than moderate tricuspid regurgitation or mild ventricular dysfunction

  • Medication criteria: twice daily diuretics or less, no recent escalation of medications within last 2 weeks to suggest instability of cardiac status.

Biventricular physiology

  • At least 2-week post-surgical repair

  • Safe swallow: definition varies center to center, our speech therapists recommend clinical evaluation with VSS if concerns

  • Established care with primary outpatient cardiologist × 1 visit

  • Echo criteria: no greater than mild ventricular dysfunction, no severe residual cardiac lesions

  • Medication criteria: twice daily diuretics or less, no recent escalation of medications within last 2 weeks to suggest instability of cardiac status.

SLP: Feeding Readiness Checklist for Tube Feed Weaning

  • Manages secretions

  • Maintains interest and awake/alert state throughout duration of feeds

  • Does not demonstrate aversive feeding behaviors (grimace, gagging, etc.) when offered PO.

  • Demonstrates functional sucking pattern and coordination of suck-swallow-breathe with or without external pacing

  • No evidence of active aspiration on current nipple

  • Tolerates current PO/NG feeding regimen with minimal episodes of emesis

  • Able to maintain stable vital signs ( no coughing, choking, desaturations, color changes) with feeding.

If accepting purees/solids.

  1. o

    Opens mouth to spoon

  2. o

    Uses lips to remove bolus from spoon/fork

  3. o

    Able to lateralize bolus and move posteriorly to swallow

  4. o

    Demonstrates functional chewing with solids

  5. o

    Minimal anterior loss of foods presented

  6. o

    Demonstrates safe swallowing when drinking from cup or straw

  7. o

    Does not demonstrate aversive feeding behaviors (grimace, gagging, etc.) when offered PO

  8. o

    Able to remain seated in high chair or at table for a minimum of 15 min.

Nutritional Readiness

  • Identify if any degree of malnutrition

    1. o

      If patient meets mild or moderate malnutrition, reasonable to still wean if no weight loss in the last month. The degree of wean is subject to provider

    2. o

      If patient meets severe malnutrition, not eligible to wean

  • Ensure appropriate nutritional-focused physical exam (NFPE) to support any evidence of malnutrition

  • Identify nutrition education to be addressed

  • Discussion with primary RD or provider managing the children’s nutrition.

Social Readiness

  • Must have access to email account

  • Must be accountable to respond to emails/phone calls and be able to communicate at least every other day with care team

  • Must be willing to come in periodically for initial assessment and PRN additional assessments during this process

  • Ability to understand and repeat red flags of when to notify care team.

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Horsley, M., Hill, G.D., Kaskie, S. et al. Evaluation of an Outpatient and Telehealth Initiative to Reduce Tube Dependency in Infants with Complex Congenital Heart Disease. Pediatr Cardiol 43, 1429–1437 (2022). https://doi.org/10.1007/s00246-022-02864-6

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  • DOI: https://doi.org/10.1007/s00246-022-02864-6

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