Premature twins who defied odds turn one

Simon and Stacey Kale with their twin daughters Grace (left) and Amelia in 2017. Photo / Crissy Brittain/Crissy Jayne Photography
Simon and Stacey Kale with their twin daughters Grace (left) and Amelia in 2017. Photo / Crissy Brittain/Crissy Jayne Photography

When Grace Kale was born she could fit her dad's wedding ring around her wrist, now only two chubby fingers can get through it.

Grace and her twin sister Amelia were born prematurely on October 13, 2017, at just 27 weeks' gestation. Amelia weighed 880g while Grace weighed 1300g before her weight dropped dramatically.

They arrived early after contracting twin-to-twin transfusion syndrome (TTTS) — a condition affecting about 10 per cent of identical twins in New Zealand.

It can affect identical twins who share a placenta (monochorionic twins). It occurs when there is an imbalance in the placenta vessels connecting the twins, meaning that blood doesn't flow evenly between them.

But against all odds — with their parents warned the girls may not survive — Grace and her identical-twin sister Amelia turned one last month.

"Both girls have us wrapped around their fingers now," said their mother Stacey.

Stacey and Simon Kale — who also have a 2-year-old son, Mason — were alerted to the life-threatening condition after Stacey's 20-week scan. Doctors cautioned the Hastings couple that Grace's heart was compromised and a potential threat to Amelia's chance of survival.

"In hindsight I think we should've got scanned at 16 weeks, it might have meant the girls were not sick in the womb and Grace's heart might not have been in such a bad condition," said the former teacher.

Last year the Kales spent Christmas together at Auckland Starship hospital. At the time, they told the Weekend Herald that all they wanted was to have the twins back at home for the next one.

Four months later the sisters were discharged. However, with multiple medical issues, they were housebound. Stacey joked that she felt like a hostage in her own home.

"It's been a crazy year. They both came home on oxygen tanks. The family has left the house twice this year. A couple of weeks ago I went to see my sister and visited my parents who live two streets away. We go to the doctors or to hospital — that is about the extent of it."

Grace was also born with congenital heart disease and chronic lung disease. Until this week she depended on an oxygen tank to survive — it weighed 3kg heavier than Grace and cumbersome to lug around.

Prior to the family being told Grace no longer needed the tank, Heart Kids — which has supported the twins since birth — had this week donated an oxygen bag for the twins which was lighter and more portable.

The Kales will give the bag and tanks to Heart Kids Hawke's Bay so other families can have access to them.

"The reality is it's hard to go out on my own with the girls and their oxygen tanks — going into our backyard is tricky. We had to re-home our dog Moose because I couldn't get out to walk him. With Mason, and [the] twins on tanks, the dog would get in the way — knock over the tanks or get tangled up in the cords.

"Hopefully when it's summer we will get out more."

Going to daycare and mixing with other children is limited for the girls.

"A simple sniffle can be detrimental so our priority is to make sure they are healthy. If Grace cries too much she turns blue."

The twins are happy in each others' company — mostly.

"Although Amelia is the younger twin she is bossy. She is a bit precious and gets upset easily. Grace is so chilled. She is so cruisey, when she cries you know something is wrong.

"Amelia is like I'll take that, and that ... that's mine, whereas Grace sits there and laughs," said Stacey.

Big brother Mason is madly in love with his twin sisters.

"He's 2-and-a-half and gives them his favourite trains and toys. He doesn't understand the medical stuff but he loves helping me with the girls — he's very caring," said Stacey.

The sisters were hospitalised twice this year with Bronchiolitis — a common virus that causes wheezing and makes breathing difficult. Stacey believes Bronchiolitis has hindered the twins' development.

After Grace was born she needed heart bypass surgery to fix her pulmonary valve, when she turns 5 she'll need surgery to close the hole in her heart, and open-heart surgery when she's 10.

Stacey says it is hard her twins' milestones are delayed. Mason was born weighing more than 4kg and could walk before he was 1.

"The girls had a harder time being born ... so weak and premature. Each time they've been hospitalised it's been 5-10 day stays, which knocks them around. They are not rolling but their developmental therapist is helping them to develop their muscles so they can.

"Amelia can sit up and say 'Oh-O' and 'mum'. Grace is starting to babble. They look like giants to me but they are still underweight for their age. At 13 months they can fit clothes for a 3- to 6-month-old baby".

The Kales are now preparing to celebrate their first family Christmas together, but it will be "low-key". Stacey and Simon's new year resolution is to "start living again", despite the exhaustion from raising a young family.

"It's such a small sacrifice in life. We always knew the twins would be hard work, when they have rough nights with teething we think this is bloody hard I say to Simon we are really lucky to have our babies to wake us up.

"It wasn't long ago we couldn't be guaranteed we would ever hold them again."

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