Cooperation in a remote rural area of Waikato enabled two babies with complex cardiac conditions to access specialist care at Starship Hospital in Auckland and follow up treatment and monitoring in their own home back in Taumarunui.
The outcome for both babies – Theodore and Vasiliy – is good, thanks to the skilled local nursing team, the Cardiac Close (Home) Monitoring Programme, hospital specialists, local GPs and Angel Flight NZ, a charity funded by Rotary, private and corporate donations.
Angel Flight co-ordinates non-emergency flights, assisting people with a medical condition and long distances by flying them to an airport near their medical treatment facility. One of their “earth angels” meets the flight to drive the patient to their medical appointment. Both the air and road transport is provided free of charge as volunteer pilots and drivers donate both their time and their aircraft or cars.
Tracy Thompson, clinical nurse specialist with Waikato DHB’s neonatal homecare team, describes the transportation issues families from rural areas can face:
“Vasiliy and Theodore both required CT scans of their hearts at Starship Hospital at three months of age. This trip from Taumarunui to Auckland by car would take five hours for these medically fragile infants,” she says. Theodore was first to have his CT scan in November last year. The family drove to Auckland but found they had to stop every two hours as Theodore became extremely clammy in his car seat and was breathing abnormally quickly (tachypnoiec). These added stops made a difficult journey almost impossible.
“When it came time for Theodore to head to Starship in January for his second open heart surgery we investigated other travel options including ambulance transfer,” Tracy says. “Then we heard about Angel Flight NZ. We spoke to their team and within three days a flight was arranged for Theodore and his mum Lauren to be transported by air to Auckland. This transfer was well planned out, safe and extremely effective. Vasiliy was able to also use Angel Flight for his return trip to Auckland for his CT scan.”
Cardiac infants like Theodore and Vasiliy are a new cohort of infants who, thanks to modern technology, are surviving the neonatal period due to antenatal diagnoses and subsequent early open heart surgery. However these babies remain extremely fragile until after they have had a second heart operation (known as bi-directional Glenn) at three to five months of age.
Tracy notes that numbers of these babies who discharge home from Starship nationally are small and it was very unusual that two babies in the home monitoring programme were situated so close together in the small Waikato community of Taumarunui.
Theodore is an 11 month old infant who was born with a complex cardiac condition. He is the second child to Lauren and Bernard and brother to two year old Zoe. Together they all live in an extremely remote location 22kms west of Taumarunui – with 14 kilometres of this being a windy, climbing metal road.
Lauren was 35 weeks pregnant when she went for a scan to check that the baby was laying the right way. It was at this scan that a late antenatal diagnosis of a severe congenital heart defect was made. Theodore was found to have an Ebstein’s anomaly involving the tricuspid valve, but more severe was that he had a hypoplastic right ventricle. The delivery of Theodore was organised to happen at Auckland Hospital to be close to specialist paediatric cardiac services at Starship Hospital.
Following his setbacks Theodore was able to discharge from Starship Hospital at the age of five weeks and move to Waikato Hospital for establishing oral feeds and weight monitoring before finally being discharged home.
As Theodore is functioning with a single heart ventricle and is totally dependent on a systemic-pulmonary shunt for blood to be conducted to the lungs he is on the Cardiac Close (Home) Monitoring Programme. This involves twice weekly home visits to monitor his circulation.
Due to the extremely isolated, rural location Theodore was followed up once a week by the specialist neonatal homecare nurses (either Tracy Thompson or Catherine Dollimore) and once a week by his general practitioner (GP) Dr Anna Teata. He was also monitored closely by one of the local district nurses, Sara McIntyre, who had an extensive background of neonatal intensive care.
Tracy says the service provided by Sara was invaluable as she was able to deliver nursing care quickly, effectively and provide support which was extremely receptive to the family’s needs. “An example of this was seen the first time Theo’s NG tube fell out. It was late winter and the neonatal homecare team was three hours away. Sara was able to navigate the extremely difficult rural roads, and home visit to provide support for Lauren as she replaced the tube.”
Today Theodore is going ahead developmentally and physically in leaps and bounds. He had his second heart surgery – a bi-directional Glenn procedure at age 6 months and the post-operative period was not all smooth sailing. He got through that, but was then diagnosed with an allergy to cows’ milk. After discussion with Tara Chaplow (the Waikato DHB community paediatric dietician) Theodore was changed to soya infant formula and a dairy free diet and he has never looked back. He is now crawling everywhere and into everything!! He has a wicked smile and a very cheeky personality. He loves pulling his sisters hair.
Theodore is still seen monthly by his GP in Taumarunui and monthly by the local district nurse Sara McIntyre but the specialist neonatal homecare nurse no longer needs to be involved. He will be monitored throughout childhood by the specialist cardiac team at Starship Hospital and he will require further cardiac surgery.
Both his mum Lauren and dad Bernard are absolutely in awe of where he has come from and the happy, healthy farm boy he is now.
Vasiliy is a six month old infant who lives with his mum Anna, dad Sergey and four siblings in Taumarunui. Vasiliy was also diagnosed antenatally with a complex heart anomaly (double inlet left ventricle) and as such was a planned delivery at Auckland Hospital. After birth he transferred immediately to Starship’s paediatric intensive care unit where he underwent open heart surgery (Norwood procedure). He remained in hospital for five weeks and then discharged home to his family in Taumarunui.
Recently Vasiliy had his bi-directional Glenn procedure at Starship Hospital. He has come through surgery well and is at home with his family. While it is very early days, Vasiliy is recovering well. He is fully breastfeeding and the nursing team are watching his weight closely. He will be seen on alternate weeks by his GP Dr Anna Teata and one of the clinical nurse specialists in the neonatal homecare team. District nurse Sara McIntyre will also visit weekly until he is well on the road to recovery.
On behalf of everyone involved with Vasiliy and Theodore we would like to thank the Angel Flight pilots who donated their time, flying hours and fuel, and the Earth Angels who met and drove these infants and mothers to Starship Hospital. Also a big thank you to Ardmore airport who kindly waivered their landing fees for these flights. The generosity of everyone who made this trip possible cannot be underestimated.