When Nikki Rabold-Cowley remembers her baby Tommy, she thinks of his smile.
"He had a smile like nothing else," the 42-year-old from Sydney says.
Tommy was born with hypoplastic left heart syndrome, a rare heart defect present at birth.
His life was short — just five months — but in that time Tommy had an impact that travelled far beyond his loving family.
His birth meant Nikki was able to donate 100 litres of breastmilk to babies in need, and stem cells collected from Tommy's cord blood have supported heart research.
"Hundreds of babies benefit because he was born, because Tommy was here," says Nikki, who is also mum to eight-year-old Connor and 23-year-old Chloe, and works as a registered nurse in a neonatal intensive care unit.
October 19 would have been Tommy's fourth birthday.
Here, Nikki honours his life, and shares how breastmilk donation was a meaningful part of her and Tommy's journey together.
These are her words.
'An opportunity to be known and loved'
At my 18-week pregnancy scan, we were told Tommy had hypoplastic left heart syndrome.
We were faced with some tough questions.
There is a three-stage palliation surgery [surgery that helps a patient feel more comfortable and improves the quality of life, but does not cure the disease] they do for that. It's an operation at four days old, four months old, and around four years.
That can lead to them having some quality of life, although we still knew 30-year-olds with his condition were far and few between.
We had to think about what we could live with, and for both my husband Pete and I, we didn't want that question of "What if?" [if we didn't proceed with the pregnancy].
What if he would have been alright?
We decided to give him a go. We would let Tommy choose his own journey and go along with him.
Love him, support him, and give him an opportunity to be known and loved.
'I gave him the best milk I could'
When Tommy was born, I was able to hold him for a couple of minutes before he went to NICU.
I knew there was not much chance Tommy would breastfeed, but to me that wasn't necessarily important.
It was important I gave him the best milk I could.
Then he developed a complication where he couldn't have fat in the diet, so he needed a special type of formula.
I began researching how to skim my milk to remove the fat, and worked with the team to make a plan.
I bought a machine from Ukraine — a milk-cream separator.
He was having such small amounts, so I would collect milk for 24 hours, skim that, then that was enough for the week.
Everyone was like, 'Oh, he probably won't be able to drink', but everybody had such control over Tommy and what he was doing.
I had no control over anything in my life at the time.
The only thing I had control over was my breastmilk. It was mine. Nobody else could give it to him.
And it was probably one of the biggest connections that I had where I felt like his mum.
I had so much extra milk, and after talking to Chris Sulfaro, the national milk operations manager for Lifeblood, we realised I could donate the rest. I already had so much stashed away.
'I held him in a way I'd been dreaming of holding him the whole time'
The second surgery seemed to go quite well, but he never really woke up from that surgery.
One night they called me in at 3.30am and said "Tommy is not doing well".
It was a lot of chaos at that time.
At one point Tommy opened his eyes, and they said, "We need to put him back to sleep."
I remember this moment. I just looked at him, and he was all there. I leaned over and said, "We love you so much and we are so proud of you, and I am so glad you chose me to be your mum."
I told him I loved him and to do whatever he needed to do.
They were worried I wouldn't let him go, but I remember just reaching a point [where I knew we were just keeping his body alive] and said, "I want you to stop now."
It was just f*cked. It was really f*cked.
After he passed, we spent the day there together. We gave him a bath and dressed him.
I held him in a way I'd been dreaming of holding him the whole time: laying on his tummy, on my chest.
He was cold when I put him on my chest, but by the time I put him back down, he was warm again.
What Tommy's life meant
Going home was so hard. How do you go from that being your normal, to what felt like nothing?
We have no regrets though. Tommy taught us about bravery and resilience.
Our smiley boy.
Some people might think Tommy's life was short, and even though he never left the hospital, his life meant so much.
The stem cell people heard about Tommy's death and kindly refunded our money. We were able to donate them to heart research through the hospital.
They told us Tommy was able to give double the average amount of stem cells from his cord blood, which is insane.
On the day of his funeral, Chris from Lifeblood sent me a message to let me know how many litres of milk there was.
It was 100 litres all up. Lifeblood got about 85, and I gave some to Facebook groups as well.
Tommy's life helped other babies. And it's something no-one can take away from me.
It was mine, and only I did it.
