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Over the next 24 hours, the situation changed rapidly.
After her midwife spoke to the local paediatric team, Gillian rushed Lacey to Thames Hospital where the emergency team took over.
Over the next few hours, Lacey’s mysterious condition deteriorated dramatically.
Gillian and her husband Jordan were told Lacey needed urgent specialist care at a better-equipped hospital. Waikato Hospital.
Assume an ambulance takes Lacey to Hamiltonthe seriousness of their daughter’s condition became clear because Waikato Westpac Rescue Helicopter Arriving with the travel incubator, the team began preparing Lacey for a quick transfer via rescue helicopter.
“To be honest, I can’t remember everything that happened in those few hours,” Jillian said.
“The ER team put her on monitoring equipment and they were concerned about the results they were getting; one of the first concerns was her low oxygen saturation readings.
“They are talking to the NICU Waikato Hospital For most of these hours, she was given priority for transport to Waikato.
“They couldn’t tell us much about the medical situation other than it was being monitored, but they assured us that Waikato was aware of it and there was a doctor and a rescue team of nurses on their way to get her.
“The staff were fantastic during this time and made me feel at ease. Once they hooked Lacey up to the monitor, I felt comfortable and held her until the helicopter arrived.”
Accompanied by rescuers, Jillian boarded a rescue helicopter to reunite with her children.
“That’s when I realized: time is crucial to Lacey’s survival.”
The medical team on the helicopter monitored Lacey’s condition. A few minutes later, the rescue helicopter landed at Waikato Hospital and Lacey was quickly taken to the intensive care unit.
Examination revealed that Lacey had a rare heart condition called transpulmonary venous valvular disease (TAPVD), and her pulmonary veins were connected to the right atrium instead of the left atrium, which meant that blood could not circulate properly and Lacey could not get enough oxygen.
That night, Lacey was intubated to help her breathe as her fragile body became too much to handle.
Starship’s cardiology team was consulted, and Lacey was rushed to Starship Hospital For emergency open heart surgery.
After several complications, Lacey slowly began to recover.
Lacey spent seven weeks at the Starfleet hospital.
A month after the first surgery, Lacey underwent a second open-heart surgery to redirect a large abnormal vein that passed through the diaphragm and led from the liver to the heart.
Gillian said: “There were some complications following open heart surgery which was not unexpected but did keep us in Starship Hospital longer than expected.”
“These include pneumothorax (air is trapped in the chest cavity, causing the lung to collapse), chylothorax (lymphatic fluid ‘leaks’ into the space surrounding the lung), a second open heart surgery for secondary repair, and wound infection.
“These sound pretty scary and serious, but they are all known complications of open-heart surgery and they are all managed very well.”
Jillian describes the rare congenital heart defect (TAPVD) that Lacey suffers from as “random plumbing”.
Total anomalous pulmonary venous connection is a unique and often unrecognized asymptomatic condition that has few obvious symptoms, is often untreated, and can lead to sudden infant death.
Within 24 hours, 16-day-old Lacey had a routine midwifery checkup at home and then went to Starship Hospital for emergency open-heart surgery.
“We are very pleased with the treatment that Lacey and our entire family have received; we have been well cared for and felt very informed and safe throughout treatment,” said Jillian.
“Lacey’s follow-up care has been excellent; we are very fortunate that she has been recovering well since being discharged from Starship Hospital and has only had to see her paediatrician and cardiologist in Waikato once a year initially and now every six months.
“She’s basically been ‘repaired’ but because of the repairs, her heart looks slightly different than a normal heart.
“We call it abnormal normality, it doesn’t look normal, but it functions normally.”
Gillian said that while TAPVD is a known heart condition and is rare, it is nothing new.
“We were told at the time that TAPVD accounts for about 1% of all congenital heart defects; the surgeon who operated on Lacey didn’t remember any babies with TAPVD in the previous year, but oddly, three babies were born the same week Lacey arrived on Starship.
“There are many types of TAPVD, but all involve one or all of the pulmonary veins being randomly rerouted within the body and back to the heart.
“It’s not inherited, it’s congenital; so Lacey’s heart was shaped this way before she was born, but we don’t know why.
“TAPVD is difficult to detect with routine fetal ultrasound because the pulmonary veins are so small.”
Now the 5-year-old is recovering well, her mother said.
Jillian said: “She started school in term one this year and is doing really well. She will be taking part in her first school cross country run this Friday and she is really excited about it.”
“You wouldn’t have known she was a ‘heart kid,’ and a lot of people were surprised to learn she had a pretty rough start with heart disease.
“She’s frisky, energetic and as rowdy as any other 5-year-old.
“When she saw the Westpac helicopter flying over she used to claim it was ‘hers’.
“Without that helicopter and the outstanding care she received in every way, she likely would not be here.”
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