Rotorua woman's baby born with heart defects during lockdown

Rotorua's Alysha Ashby and her son Kylan Black who required open heart surgery eight days after being born. Photo / Andrew Warner

"It was just hard, you feel lonely. I couldn't even have my mum at the birth."

Those are the words of Rotorua's Alysha Ashby who, during lockdown, fought through one of the toughest experiences of her life and came out the other side with a beautiful baby boy.

On April 26, in the middle of a nationwide lockdown, Ashby gave birth to Kylan Black in Auckland. She and her partner Christian Black were not even allowed to see Kylan at the same time until four days later.

Kylan was born with transposition of the great arteries and pulmonary stenosis, as well as two holes in his heart. His heart conditions meant open heart surgery was required eight days after he was born if he was going to live to see his first birthday.

As a 20-year-old first time mother, it was a terrifying ordeal.

"We found out he had his heart condition when I was 20 weeks pregnant. When I was 37 weeks pregnant we went up to Auckland to have him there and we found out he had another condition," Ashby said.

Transposition of the great arteries changes the way blood circulates through the body, leaving a shortage of oxygen in blood flowing from the heart to the rest of the body.

Without an adequate supply of oxygen-rich blood, the body can't function properly and the child faces serious complications or death without treatment. Pulmonary stenosis is when the pulmonary valve is too narrow.

Kylan's surgery went "really well" and he is now a healthy, happy 2-month old.

"When we found out about the first one it was the scariest because it's quite serious. Just the thought of losing your child if they don't have the surgery is scary. Even the thought of your child having surgery almost as soon as he's born is scary as well.

"Knowing that even though it's fixed, it might still affect him and he might need another surgery later in life, it's something I'll have to worry about for the rest of his life. He is so strong though."

What Ashby went through would have been tough on any mother. It is a time when most would fall back on the support of loved ones, such as their own parents, but the nationwide lockdown meant even that was made harder.

"We weren't allowed any support up there. My partner's mum dropped us in Auckland and after that we didn't see our family. We went up on April 9 and came back on May 13 so we didn't see them for over a month.

Alysha Ashby gave birth to Kylan Black in the middle of the nationwide lockdown. Photo / Andrew Warner

"My partner couldn't even be with me until I was in the birthing unit. He couldn't come to any of my appointments and we weren't allowed to see [Kylan] at the same time, so I wasn't seeing my partner often either. There were definitely a lot of tears.

"You feel lonely not having your family there. I'm a new mum and I'm only 20. Learning how to be a new mum at a young age, without the support of my family, is really hard."

Now at home in Rotorua and surrounded by family, spending quality time with her boy, it is all worth it.

"He's so sweet, he's so happy and you can just tell that he's got a good soul. It definitely makes it worth it, he has the most beautiful smile and seeing him makes me happy. Just with what he's gone through, if he didn't have the scar you wouldn't even know he'd been through anything like that.

"After not having family during lockdown, it is so much better now. If I'm stressed out or don't know what to do I call my mum and we live with my partner's mum so we have her there when we need her too."

He's so sweet, he's so happy and you can just tell that he's got a good soul. It definitely makes it worth it, he has the most beautiful smile and seeing him makes me happy.

June is Heart Kids Awareness month. Heart Kids is the only not-for-profit organisation dedicated to supporting New Zealand's "heart children", standing by the side of children like Kylan through every traumatic diagnosis and surgical procedure. Every week in New Zealand 12 babies are born with a heart defect, that is one in every 100 births.

Ashby said the support of Heart Kids was crucial, particularly while in Auckland, away from her family.

"I got in touch with them while I was pregnant and had a support worker. I met up with her before lockdown and she was so lovely. She told me what was available to me, they gave me vouchers for the supermarket and The Warehouse for when I was in Auckland, in case I needed basic things like food or little things for baby.

"When I was in Auckland she still texted me and I had a support worker up there as well. She just called me as often as she could and it was so hopeful. Being alone in the hospital was hard but having that call, I looked forward to that," Ashby said.

* You can donate to Heart Kids at shakeabucket.org.nz and learn more about Brave Hearts at www.heartkids.org.nz.