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Home monitoring programme - discharge information

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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.

Please have a low threshold for readmission to hospital

  • If infant develops an intercurrent illness: respiratory or diarrhoea and vomiting (maintaining adequate fluid intake and circulating blood volume is paramount for these children).
    • When infant has diarrhoea and vomiting consider withholding diuretics or dietary supplements for duration of illness
  • If the infant is irritable beyond normal expectations, more sleepy than normal or not feeding well.
  • If infant is blue, saturations are dropping or there is increased work of breathing: Call 111 to readmit to hospital urgently. NB: Refer to emergency guidelines in the event that the infant presents to an emergency department

Please notify the Starship Paediatric Cardiologist on-call if re-admitted to hospital: Auckland City Hospital: (09) 367 0000

For queries regarding the program, please contact the cardiac nurse specialists:
Heather Spinetto  HSpin@adhb.govt.nz or 021774606
Julie Stubbs  jstubbs@adhb.govt.nz or 021 614 348

Anatomy and Physiology

Infants dependent on systemic - pulmonary shunts are very brittle.  Their physiology is dependant on balancing systemic and pulmonary blood flow. The shunt is the only way that blood is conducted to the lungs, and relies on carefully balanced pressures to ensure this is effective.

Too much blood flow to the lungs can steal from blood flow to the body causing poor perfusion, acidosis and shock. Too little blood flow to the lungs can occur if the shunt narrows/blocks (or respiratory condition develops) causing severe cyanosis. All infants with shunts continue on low dose aspirin (3-5mg/kg/day) to prevent clot formation.

Red flags for these infants include:

  • Resting oxygen saturations > 5% lower than expected range
  • Increased work of breathing
  • Weight loss
  • Acidosis
  • Dehydration

Programme Requirements

Caregivers

Caregivers have been provided with a baby scale and SaO2 monitor and will check infant's weight and oxygen saturation daily. This aims to identify any early sign of developing infection, dehydration and/or general decline to prevent deterioration/ collapse.

Caregivers have been educated to observe for signs of congestive heart failure, poor feeding, low urine output, change in level of alertness or general wellbeing and behaviour. If the infant breaches any of the parameters given, they have been advised to seek medical help ASAP. We recommend infants be evaluated by clinician within 24 hours in this event.

Caregivers have had extensive education regarding their infant's condition and expected course of treatment. Their ability to manage equipment and make accurate measurements has been assessed prior to discharge. Each family is given a resource folder with both general and specific information relating to their baby.

Community nursing

Weekly visits (twice weekly if possible) are requested to review the infant and check in with the caregiver. Monitoring must continue until the time of the 2nd stage operation (usually at 3-4 months of age).

Please report the daily oxygen saturation and weight recordings back to the cardiac nurse specialists every week, plus a monthly length and head circumference, or earlier if there is cause for concern. These are entered into a central database to track each infant's progress and used to determine timing of surgery.

Please also notify the nurse specialists of any problems requiring medical review:

Heather Spinetto  HSpin@adhb.govt.nz or 021774606
Julie Stubbs  jstubbs@adhb.govt.nz or 021 614 348

Paediatrician

If local resources allow we recommend that these infants are reviewed in clinic every 4 weeks with an ECHO looking particularly for deteriorating ventricular function and / or increasing valvular regurgitation and neoaortic arch obstruction until they have undergone the 2nd stage Bi-Directional Glenn operation.

Starship Cardiology

The program is coordinated from Starship by the Clinical Nurse Specialists, who prepare families for discharge. They will notify community services prior to discharge, provide information and resources. Any queries or problems should be directed to them (contact details above).

The lead cardiologist (or on-call cardiologist) is also available for consultation regarding any medical issues that may arise.

Programme Guidelines

Caregivers have been instructed to contact their community nurse or local clinician for medical review ASAP if their infant breaches any of the parameters given below. We recommend infants be evaluated by a clinician within 24 hours in the event they are contacted for any of these reasons.

Weight gain

  • If the infant:
    • fails to gain 20 grams of weight over a 3 day period
    • does not achieve a weight gain of 150 - 200gms/week (up to 3 months of age)

These babies may require up to 50% more calories than babies without complex Congenital Heart Defects to maintain appropriate growth across their centile. i.e 150kcal/kg/day5 6. Concerns with nutritional issues - please refer to local hospital/community dietician or contact Barbara Cormack (paediatric cardiology dietician): bcormack@adhb.govt.nz

Weight Loss

  • If the infant has a weight loss of 50gms or more in one day

    Acute weight loss may be an early indication of dehydration which could increase the risk of shunt blockage, an emergency situation.

Saturations

  • If resting oxygen saturations drop > 5% lower than the infant's normal range
  • Dropping saturations may be an early indicator of illness, or indicate a narrowing of the central shunt which requires urgent surgical intervention. 

    Expected saturations for this infant: ………% to ………%

General observations

  • If the infant has:
    • tachycardia at rest
    • respiratory or gastrointestinal illness
    • increased work of breathing/ distress
    • changes in perfusion
    • decreased feeding
    • unexplained irritability

Generalised, non-specific changes in appearance and/ or behaviour can be a dangerous sign for these infants and precipitate a sudden deterioration.


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: 29 July 2016
  • Document type: Other
  • Services responsible: Paediatric Cardiology
  • Author(s): Tim Hornung, Julie Stubbs, Marion Hamer
  • Editor: Marion Hamer
  • Review frequency: 2 years