Praying for a miracle
Hastings couple’s Christmas wish is that premature twins born with rare condition will survive to make it home for Xmas 2018
All Stacey and Simon Kale want for Christmas is for their identical twin daughters, Grace and Amelia, to make it home for the next one. The twin sisters were born prematurely 10 weeks ago — at 27 weeks. Amelia weighed 880 grams and Grace weighed 1300 grams, before her weight dramatically dropped.
The girls arrived early after contracting twin-to-twin transfusion syndrome — a rare condition affecting about 10 per cent of identical twins in New Zealand.
Grace and Amelia were not expected to make it, but have bravely fought for their lives at Auckland’s Starship hospital.
The Kales, who have a 19-monthold son, Mason, were alerted to the twins’ life-threatening condition soon after Stacey had a 20-week scan, with doctors cautioning the Hastings couple that Grace’s heart was compromised and a potential threat to Amelia’s chance of survival.
“They didn’t think she [Grace] would be viable at birth and there was a chance we could lose her,” Simon said. “We had to talk about if we got to the stage Grace was putting Amelia at risk, what we would do.”
The couple have always wanted three children.
But before becoming pregnant with the twins, Stacey wasn’t confident that dream would become a reality after battling mastitis.
“I said, ‘God, Simon, I don’t think I can do this three times,’” she said.
She added that they were then “stoked” to find out she was carrying twins. The news that the twins were battling TTTS — and that Grace’s heart was in rapid decline — left the young family shocked.
TTTS can affect identical twins who share a placenta (monochorionic twins). It occurs when there’s an imbalance in the placental blood vessels connecting the twins, meaning the blood doesn’t flow evenly between them.
One gets more blood and the other gets less. This results in the recipient twin growing too big due to the extra nutrients and fluid, and the donor twin growing too slowly.
Twins are in the Kale family’s DNA. Simon’s father is a fraternal twin. But when baby Grace’s life was in danger he found it “difficult” seeing twins on television and out and about.
“It was too hard. When I would see twins on TV I would think how lucky they were. I was almost protecting myself thinking we were only going to end up with one baby.”
Further scans revealed that Amelia was doing well but doctors still warned the couple their twin girls could die in utero, or at least one of them.
“They told us the other twin [Amelia] would still grow,” Stacey said. “It was a daunting time. I was their mother — no one could feel them the way I could. They felt so strong. I decided as long as they are fighting I would too. It was so hard to prepare yourself for the worst and still be hopeful.”
The thing they kept focusing on was hearing the two hearts beating.
They also focused on ensuring their precious children were given names while in the womb.
Stacey liked the name Amelia and chose the name Grace after her surrogate grandmother, who lived next
It was so hard to prepare yourself for the worst and still be hopeful.
door to them and has since died.
“Once we got the diagnosis I wanted to choose their names then and there — because if anything happened to them at least they would have a name. That was important to me,” said Stacey.
On Friday, October 13, Grace and Amelia took their first breath.
Doctors were also prepared for it to be Grace’s last.
Each twin weighed a little more than a block of butter — they were separated at birth in their own incubators in the neonatal intensive care unit.
“Grace was under a lot of care when she was first born,” Stacey said.
“I didn’t get to cuddle Amelia until she was five days old and I had to wait to 16 days to cuddle Grace. She was in hyperventilation and had to be sedated. It was pretty rough going.”
Miraculously Grace fought back and her mother got to cuddle her.
“It felt real for the first time. They were hooked up to breathing machines for days. It goes against your instinct as a mum not to hold your baby. So when you can — it’s the best feeling.”
On December 6 Grace had openheart bypass surgery to fix her pulmonary valve.
The five-hour operation was challenging but successful. But two days later the Kales had to prepare themselves again for the risk Grace might not make it.
“We weren’t sure if she’d pull through once they closed her chest,” Simon said. “Initially things were going well then she started to struggle. We were so worried we were going to lose her but then things slowly started to turn around.”
Grace wears Simon’s wedding band around her wrist — and both parents agree she will have them wrapped around her finger when she grows up.
“Grace will be the one that dominates the kids in the family. She’s stroppy. A tough little nut — we are very lucky,” Stacey said.
The couple are grateful for the support they’ve had from their families and medical staff at the Starship; the medics have worked tirelessly to keep the twins alive and ensure they bonded.
“We owe our girls’ lives to them. The first time the nurses brought them down we put their beds next to each other — we had never seen them together so that was really special. It was really important for them to cuddle,” said Stacey.
They’ve also been touched by the support from Heartkids, a non-profit organisation helping children with congenital heart defects and their families.
“They have given us practical support with grocery vouchers and hot chocolates — and emotional support when the days are tough,” said Stacey.
Stacey and Simon will spend Christmas day at the Starship with the twins and Mason — who has flown from Hastings.
They never imagined having “sick babies and spending Christmas in hospital”.
But they feel blessed their family is finally together and hopefully one step closer to being home.
Stacey Kale