Gillian and Lacey Downes share a special story.
Time was of the essence for Lacey Downes’ survival as she was fighting for her life at only 16 days old.
Born on December 31, she entered 2019 as a healthy daughter to Gillian and Jordan Downes, and little sister to Caleb.
Just over two weeks later, on January 16, Lacey was fighting for her life. During a routine midwife appointment at their home in Thames, alarm bells rang when Lacey’s midwife noticed the child’s skin tone looked vaguely blue.
The change in tone was so subtle, surprising Gillian, who had no prior cause for concern.
Lacey was typically a happy and healthy baby; she was progressing well and displayed no signs of what had been unfolding within her tiny body.
In the next 24 hours, things changed rapidly.
Following calls between the midwife and the local paediatric team, Gillian rushed Lacey to Thames Hospital where the emergency team took over.
During the following hours, Lacey’s mystery condition dramatically worsened.
Gillian and husband Jordan were advised Lacey required urgent specialist care at the better-equipped Waikato Hospital.
Assuming an ambulance would take Lacey on the 90-minute drive to Hamilton, the gravity of their daughter’s situation became clear when the Waikato Westpac Rescue Helicopter arrived with a travel incubator and the team began prepping Lacey for swift transfer on the rescue helicopter.
“I can’t remember a whole lot from these few hours to be honest,” Gillian said.
“The ED team had her on monitoring equipment and they were worried about the results they were getting; one of the priorities being her low oxygen saturation readings.
“They were speaking to NICU in Waikato Hospital for a good part of this few hours and she was prioritised for transport to Waikato.
“There wasn’t a whole lot they could tell us about what was going on, medically, except for the monitoring they were doing but they reassured us that Waikato was aware and that a doctor and a nurse retrieval team were coming to get her.
“The staff were wonderful during this time and so comforting. I was made comfortable and held Lacey, once they had her hooked up to monitoring, for the whole time until the helicopter arrived.”
Accompanied by emergency crew, Gillian boarded the rescue helicopter to join her baby.
“That’s when it hit home: time was of the essence for Lacey’s survival.”
Onboard the helicopter the medical team monitored Lacey’s decline. Within a few minutes the rescue helicopter landed at Waikato Hospital and Lacey was whisked into intensive care.
Examinations revealed Lacey had a rare heart condition called TAPVD, her pulmonary vein was connected to her right atrium, instead of left, which meant blood couldn’t circulate properly for Lacey to receive adequate oxygen.
That night, as her fragile system struggled to cope, Lacey was intubated to help her breathe.
Starship’s cardiology team was consulted and early the next day Lacey was flown to Starship Hospital for emergency open heart surgery.
After several complications, Lacey slowly began to recover.
Lacey spent seven weeks at Starship.
And a month after her first operation, Lacey underwent a second open heart surgery to redirect a large abnormal vein running through her diaphragm leading from her liver to her heart.
“There were a number of complications which were not unexpected after open heart surgery, but did make our stay in Starship longer than expected,” Gillian said.
“These included pneumothorax [air trapped in the thoracic cavity, causing lung collapse], chylothorax [a ‘leak’ of lymphatic fluid into the space around the lungs], a second open heart surgery to do a secondary repair and a wound infection.
“These sound quite scary and major but are known complications of open-heart surgery and were all handled very well.”
Gillian described TAPVD, Lacey’s rare congenital heart defect, as “random plumbing”.
Total Anomalous Pulmonary Venous Drainage is a unique and often undetected silent condition, with few obvious symptoms it typically remains untreated and can lead to sudden infant death.
In less than 24 hours, 16-day-old Lacey went from a routine midwife exam at home, to urgent open-heart surgery at Starship.
“We were very happy with the treatment that Lacey and our whole family received; we were all very well cared for and felt very informed and safe during the whole ordeal,” Gillian said.
“Lacey’s follow up has been great; we have been very fortunate that her recovery since discharge from Starship has been uneventful with just annual checks initially, and now bi-annual checks, with a paediatrician and cardiologist in Waikato.
“She is essentially ‘fixed’ but her heart looks slightly different to an average heart due to the repairs that were done.
“Abnormally normal is what we call it, looks abnormal, works normally.”
Gillian said while TAPVD was a known heart condition, and rare, it was nothing new.
“We were told at the time, the prevalence of TAPVD is about 1% of all congenital heart defects; the surgeon who performed Lacey’s surgery couldn’t recall any TAPVD babies in the previous year but had oddly enough, had three all in the same week Lacey arrived at Starship.
“There are different types of TAPVD but all involve either one or all of the pulmonary veins rerouting in random ways around the body, then back to the heart.
“It isn’t hereditary, it is congenital; so, Lacey’s heart formed this way before she was born for no known reason.
“It is incredibly hard to detect TAPVD on a regular foetal ultrasound as the pulmonary veins are so small.”
Now the 5-year-old is doing well, her mum said.
“She started school in term one this year and is doing really well, she’s about to run her first school cross country this Friday which she is very excited about, " Gillian said.
“You’d have no idea that she is a ‘heart kid’ and many people are very surprised when they find out about her pretty tough start.
“She’s full of sass and is very energetic, she’s rough and tumble just like any other 5-year-old.
“She often claims the Westpac Helicopter as ‘hers’ when she sees it fly over.
“She quite possibly would not be here without that helicopter and the amazing healthcare that she received in every aspect.”
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