Henley Hutchens was an IVF miracle baby. She tragically died when she was just two years old.
Henley Hutchens was an IVF miracle baby. She tragically died when she was just two years old.

Family’s heartache over miracle baby

BY all accounts, happy and healthy Henley Hutchens was an IVF miracle baby.

After trying to conceive for years, Craig and Ainsley's dreams came true when she was born in April of 2013. But the dreams of the first-time Adelaide parents were shattered when two years later, Henley tragically died from a brain tumour.

The energetic toddler was lethargic, vomiting and not her usual happy self. They were told she had a virus - likely gastro - and were sent home by doctor after doctor, until a middle-of-the-night dash to the Women's and Children's Hospital Adelaide changed everything.

"We bundled her up in her blanket in the middle of the night and took her to emergency - but she never woke up after that," 48-year-old Craig told news.com.au, sharing his story for the first time.

An MRI found the brain tumour and a neurosurgeon informed the couple that nothing could be done to save their daughter. She died two days later, aged just two years and two months.

"We had a tough decision to make, but we decided to donate her organs so surgery was booked for very early the Friday morning," Craig continued.

"We stayed with her in hospital for the next 36 hours. Family and close friends all came to visit and say their goodbyes.

"It's coming up to four years now, and the thing that happens is you don't think of the pain as much. You do remember a lot of the good things, which is what you want, but definitely Christmas, birthdays, family gatherings and those sorts of things is when it really hits home, because - she's not there.

"That's the hard thing to deal with because she was the real limelight of the family. She was such a fun loving, curious girl and she always made people laugh.

"She had a massive smile and the cutest little laugh and she really loved being around people. She loved life."

Henley Hutchens was curious and fun loving.
Henley Hutchens was curious and fun loving.

 

she made people laugh and loved be around people.
she made people laugh and loved be around people.

After her shock death, the couple spent 12 months going through genetic testing on eggs that had been retrieved along with Henley during their IVF journey - but it turned out her tumour was simply 'bad luck'.

They now have second daughter Easton, who is almost two-and-a-half and born from the same egg retrieval as Henley. Incredibly, Ainsley, 38, is now 20-weeks pregnant with their third child.

"You just have to remind yourself that it was bad luck, but you just never know and every time Easton has a vomit or a sniffly nose the hairs on the back of your neck prickle up and you have a panicky few days," Craig said.

"In the months after Henley's death, Ainsley and I questioned every little thing we did - and you need that reassurance from doctors, from counsellors, that you saw the first symptoms and she was at the doctors within 24 hours being treated for what they thought was wrong with her.

"They all thought it was a virus, but it was basically the tumour going rife and killing her, essentially. We had five days from the start of things going wrong, to the end."

Craig and Ainsley find Christmas, birthdays and family gatherings particularly difficult.
Craig and Ainsley find Christmas, birthdays and family gatherings particularly difficult.

In two weeks, Henley would have turned six. Two months after that marks the four-year anniversary of her death. Never forgotten, she is constantly in her family's thoughts, and continues to inspire them.

Today Craig will set out on a week-long 1070km journey from Adelaide to Melbourne, taking part in CanTeen's Road Rise, a cycling challenge raising money for Australian youth affected by cancer.

"It started with a massive void in our life, and I was a keen cyclist so it was part of my healing, but we worth both still quite empty until we started volunteering," Craig said.

"Ainsley and Easton will be waiting for me at the finish and I know there will be a few tears - this will be the longest I've been away from them since Easton was born.

"But it will be worth it - giving back is so important."

- For more information and to support the cause, visit roadraise.com.au