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Home monitoring programme - in hospital management

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Overview

Babies reliant on a shunt for supplying blood to the lungs are fragile. In particular this is true for infants who have had a Norwood Procedure1. Internationally, there is a high mortality rate for these infants, particularly prior to their second operation (the Bi-Directional Glenn) at approximately 3-4 months of age2 3. Risk factors have included lower arterial saturations. Parents of infants who die also report nonspecific complaints of irritability and poor feeding within a few days of death4.

The Home Monitoring Program has been set up in an attempt to improve survival for these babies and support for families over this highly stressful period. We are grateful for your assistance with this program and in managing these infants. You will receive a copy of this infant's medical discharge summary including the plan for follow up in the community.

If you have any queries about follow up or the program, please contact either the cardiac nurse specialists or for medical queries the on-call paediatric cardiologist at Starship.

Infants included in the program

  • All infants with single ventricle anatomy and systemic - pulmonary shunt
  • Others: decision on a case by case basis by cardiologist and/or surgeon
  • NB: parental ability to adhere to the program is also a factor, and must be established prior to discharge. If family is not able to manage the program, then the infant cannot be admitted into the Home Monitoring program and other arrangements must be made.

Pre-Operation

  • Parents to be advised that their child will stay at least one month after discharge from PICU (this may include some time at Ronald McDonald House)
  • Some infants may need to stay in hospital until their second operation (the Bi-Directional Glenn) that occurs at approximately 3-4 months of age
  • All Hypoplastic Left Heart Syndrome (HLHS) infants to be managed on NICU/ PICU pre-op when beds allow

Hypoplastic Left Heart Syndrome:

Post-op (on 23B)

Minimum Requirements for Discharge

All single ventricle infants:

  • Refer to nutrition algorithm for ALL single ventricle infants
  • Feeding regimen established prior to discharge
  • Consistent weight gain:
    • total of ≥150g-210g in the week prior to discharge (20 to 30g per day)
    • Discharge weight = birth weight or 3kg, whatever the greater (exception to 3kg weight may be made in selected cases at the discretion of the cardiologist)

All infants:

  • Family have completed the education program with the Nurse Specialist, and are able to comply with the guidelines. This includes:
    • An information/resource folder
    • Program guidelines
    • Scales and pulse oximeter loaned and family have been educated in their use (these are returned at the second surgery)
    • Calculation of weights and program guidelines
    • Danger signs and emergency guidelines
    • CPR training
    • Car seat trial
    • Action plan and contacts
    • Weights and saturations to be sent to PCCS Nurse Specialist
  • Follow-up arranged:
    • Recommendation for follow-up appointments and ECHO at least every 4 weeks (where resource allows) until Bi-Directional Glenn surgery
    • Auckland infants = 4 week post operative appointment cardiology clinic
      Infants outside of Auckland: Paediatrician follow up at transfer and ECHO every 4 weeks if possible.
  • Community support organised:
    • Paediatrician, GP and community nursing services all notified of discharge and aware of program. Resources given:
      GP/Paed referral letter 
      Program information document
    • Home nursing visits arranged
  • Hospital to hospital transfer to local hospital if patient from out of Auckland.  Recommend that the infant be nursed in single room in local hospital where possible as a precaution to avoid cross infection while in hospital - especially important in winter. 

References

  1. Wright, C. (2002). Cardiac surgery 2002: Staged repair of Hypoplastic Left Heart Syndrome. Critical Care Nursing Quarterly, 25(3), 72-78.
  2. Azarkie,A., Merklinger,S., McCrindle,B., Van Arsdell,G., Lee,K & Benson,L et al. (2001). Evolving strategies and improving outcomes of the modified Norwood Procedure: a 10-year single institution experience. Annuals of Thoracic Surgery, 72: 1349-53
  3. Mahle, W., Spray, T., Wernovsky, G, Gaynor, J. & Clark, B. (2000). Survival after reconstructive surgery for hypoplastic left heart syndrome: A 15-year experience from a single institution. Circulation, 102, (19) III-136-III-141.
  4. Ghanayem,N., Hoffman, G., Mussatto,K., Cava, J., Frommelt,P., Rudd, N., Steltzer, M., Bevandic, S., Frisbee,S., Jaquiss, R., Litwin, S. & Tweddell, J. (2003). Home surveillance program prevents interstage mortality after the Norwood procedure. The Journal of Thoracic and Cardiovascular Surgery, 126(5), 1367-77.
  5. Kelleher, D, Laussen, P, Teixeira-Pinto, A, Duggan, C (2006). Growth and correlates of nutritional status among infants with hypoplastic left heart syndrome (HLHS) after stage 1 Norwood procedure. Nutrition, (22) 237-244
  6. Steltzer, M, Rudd, N, Pick, B (2005). Nutrition Care for Newborns with Congenital Heart Disease. Clinics in Perinatology, (32) 1017-1030.

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Document Control

  • Date last published: 18 April 2016
  • Document type: Clinical Guideline
  • Services responsible: Paediatric Cardiology
  • Author(s): R Charman, Tim Hornung
  • Editor: Marion Hamer
  • Review frequency: 2 years