A young mother shared the harrowing story of the moment her unborn baby was diagnosed with a rare, life-threatening heart defect halfway through her pregnancy.
Shayna Hulm, 33, went for her 20-week scan (also known as an anatomy or anomaly scan) at Logan Hospital, south of Brisbane, on May 18.
During the 45-minute ultrasound, the baby’s bones, heart, brain, spinal cord, face, kidneys and abdomen are examined in detail. The sonographer can then check for 11 rare conditions.
Ms Hulm told Daily Mail Australia she had a feeling something was wrong when the scan took almost four hours.
“We knew something was going on, but the sonographers are not allowed to say anything about it because they are not doctors,” Hulm said.
“They spent about two and a half hours getting good pictures and videos of his heart.”
The expectant mother of three was referred to the maternity hospital in Logan and within a week a more extensive ultrasound was performed by an experienced sonographer.
Immediately after the ultrasound, Mrs Hulm and her partner Jonnie were told by a cardiologist that their son Hector had undergone a dextro-transposition of the great arteries.
At her 20-week ultrasound, Shayna Hulm was told that her son Hector had a rare heart defect known as dextro-transposition of the great arteries
Mrs Hulm (pictured) was told her baby would need life-saving open-heart surgery once he was born
Dextrotransposition of the great arteries (D-TGA) is a serious and rare congenital heart defect in which the two main arteries leaving the heart are swapped.
In D-TGA, the pulmonary artery is connected to the left lower chamber of the heart and the aorta is connected to the right lower chamber of the heart.
This means that oxygen-poor blood flows back to the body without passing through the lungs, while oxygen-rich blood flows directly back to the lungs and is not pumped to the rest of the body.
Doctors told Mrs Hulm that the condition would not affect Hector in the womb because his blood supply and oxygen came through her placenta.
However, once Hector is born, he will need open heart surgery to correct the abnormalities.
Additionally, Hector does not have a standard hole in his heart, which is a natural and essential way for fetuses to prevent blood from entering their lungs.
Once a baby is born and begins using its lungs, the hole usually closes within the first day.
Ms Hulm said there are two options to correct the heart defect, which will be determined by the results of the ultrasound scan at 38 weeks.
She explained that if a small hole develops in Hector’s heart, doctors will try to enlarge the hole using a balloon in the umbilical cord and she will then have the choice of a caesarean section or a natural birth.
Hector will then be given medication to improve his heart function. If successful, open-heart surgery will be performed two to three weeks later at Queensland Children’s Hospital in Brisbane.
If a large enough hole develops in the womb, his open-heart surgery will also be performed at the Children’s Hospital in Brisbane.
If Hector does not develop a hole in his heart in the womb, doctors will deliver him by caesarean section and operate on him immediately at the Mater Hospital.
“What happens when he is just born is still uncertain,” Hulm said.
‘We don’t yet know whether he will be operated on immediately after birth or whether we will have to wait another two to three weeks before the actual exchange of the arteries, a major heart operation, can take place.
“But we’ve been told he’ll be taken away immediately and it could be a few days before we can see him.”
Dextrotransposition of the great arteries (D-TGA) is a serious and rare congenital heart defect in which the main arteries – the pulmonary artery and the aorta – are reversed
Either way, Hector has a long road to recovery and could spend up to six months in hospital, putting a huge emotional and financial strain on the family.
Mrs. Hulm owns a small beauty salon and was unable to work as she was confined to bed rest for most of her pregnancy.
Her partner, Jonnie, works as a Fly-In Fly-Out worker on oil platforms and is often away for two to four weeks at a time.
She said if Jonnie misses Fly-Out Day, the family will have no income for weeks. However, if he does go to work, he could miss Hector’s birth and surgery.
The couple also have two sons, 13-year-old Darius and four-year-old Darren, who are very happy with their little brother.
Mrs. Hulm started a GoFundMe page to raise money to help support her family financially, as the couple are unable to work and must pay for travel, parking and accommodation costs while Hector is in hospital.
“My income has already been affected… and I cannot remain in the hospital full-time as long as Hector is a patient,” said Ms. Hulm.
‘We are currently in the process of arranging what travel, parking and accommodation will look like as I recover from my caesarean section and have a baby who will not be allowed to leave the neonatal intensive care unit for months to come.
‘Unfortunately we are not eligible for government support for parking or accommodation, not to mention the care and provision of our two sons at home.’
Ms Hulm called it “madness” that they have to pay up to $40 a day in parking fees, especially for people whose family members are in hospital for long periods.
She and her partner apply for a parking subsidy, but may not qualify because they live in a ‘grey zone’, 30 to 50 km away from the hospital.
“I thought parking would definitely be subsidized if you have a child or are in hospital for a long time,” said Ms. Hulm.
“I can’t imagine, if you don’t qualify for the subsidy, having to pay $40 every day for six to eight months. That’s just crazy, especially if you can’t work.”
Despite Hector’s heartbreaking diagnosis and the uncertainty surrounding his medical journey, Ms Hulm says she and her partner have remained positive.
Mrs Hulm praised the support she has received from her partner Jonnie (pictured) and from the nurses and doctors at both Logan Hospital and the Mater Hospital
A GoFundMe page was started for the family to raise money to cover travel, parking and lodging expenses once Hector (pictured) is born and in hospital for treatment
She also praised the support she received from her partner Jonnie and from the nurses and doctors at both Logan Hospital and the Mater Hospital.
“Honestly, my mind was so messed up that I don’t know how I would have gotten through it without someone like him,” Hulm said.
‘We are incredibly blessed to have such a great support system from both Logan and Mater Hospitals and it was great to hear how well they are looking after us.
“The fact that you know so early and can prepare for what is to come is a miracle.”
Mrs Hulm and her partner Jonnie have decided that Hector’s middle name will be Kururangi, the Māori word for hope.
“My partner really wanted Kururangi as a middle name,” Hulm said.
‘When we found out he had a heart condition, my partner was so drawn to the name that he drew enormous strength from it.
“It’s a very special name to us, and now that we’re still a long way from expecting our little boy, it takes on even more meaning.”
At the time of writing, the GoFundMe had received 15 donations totaling $6,845 and had a goal of raising $30,000.