'I lost one of my twin daughters 18 years ago. I'm still honouring her every single day.'

Content warning: This post contains the loss of a child and could be distressing for some readers.

As told to Lorna Gray.

It’s difficult to put one foot in front of the other when you lose a child, let alone think about the future. We didn’t know it at the time, but losing one of our baby twin girls, Madison, was going to become a huge part of our future, just not in the way you’d expect. She’s spurred us on for over 18 years to help others in her name. Her legacy has become part of our whole family’s – and beyond.

In 2004, Madison and her twin sister Charlotte were born extremely prematurely at 28 weeks. It hadn’t been an easy pregnancy as I’d been on bed rest for 14 weeks leading up to the labour because I’d been losing amniotic fluid. As soon as they were born, the twins were whisked off to the NICU in the Royal Hospital for Women in Randwick and spent two weeks in intensive care before they were moved into the critical care level of the unit, sharing a cot. They were tiny but progressing well for babies who’d been born a whole trimester early. Madison was born with a small hole in her heart, but we were told it was fixable, she just had to put on a little bit more weight before they could operate.

Watch: A tribute to the babies we've lost and the significance of remembering their names. Post continues after video.

After nearly two months in the NICU, my husband Joe and I were well into the swing of the twins’ routines but one evening, Madison just wasn’t settling. Normally, I’d give them one last feed at nighttime before leaving the hospital to go home to sleep. They were having blood transfusions as they fed that night – blood transfusions are common for premature babies as they don’t have enough red blood cells. I picked Madison up to try to settle her afterwards, and she started nuzzling into my neck and seemed okay, but I was worried she wasn’t herself. She was in the best hands possible, so we left for the evening and rang the following morning before we drove back to the hospital to see how she was. We were put onto the doctor who said, “We’ve got a problem with Madison. Her stomach is very distended, and we found blood in her stools.” All I took from the whole conversation was “stomach infection and antibiotics,” my biggest concern at the time was whether it would hinder her upcoming operation.

When we got into the unit however, Charlotte had been transferred back into her own crib and Madison was in intensive care with tubes all over her, so we knew then that this wasn’t just some ordinary stomach bug.

Doctors could tell from X-rays it was a very serious condition that affects one in 20 very premature babies – necrotising enterocolitis (NEC) – a disease which attacks the intestines. They had to operate immediately. Madison was too sick to be moved from her incubator to the operating theatre, so they put a partition around her bed. Doctors said most of her bowel had gone gangrene but there was still hope they could remove the damaged parts and pump her full of strong antibiotics to prevent it spreading. We were told the next 24 hours were critical.

As we got to grips with the severity of the situation, we got the girls baptised by their bedsides. We stayed overnight at the hospital and at 1am, got a knock on the door from one of the nurses saying they needed our permission to do another operation as she wasn’t responding to the antibiotics, and they needed to see how much further the infection had progressed. It was after that second operation we were told there was nothing else they could do. It had all happened so fast.

Dani with her twin daughters and husband. Image: Supplied.

The hospital made the next 12 hours lovely for us. They put a little dress on Madison after her surgery, and we called in our family. We waited for them all to see her then at 9am; we switched off her life support. She died peacefully in our arms.

Numbly, we started making arrangements for Madison’s funeral and decided to ask for donations to the hospital in lieu of flowers. Afterwards, we were absolutely gobsmacked and humbled when we realised we’d raised $15,000. At the time, we’d just lost our child, and Charlotte was still in hospital, so we weren’t really thinking about setting anything up in Madison’s memory. But once we got Charlotte home, we had a meeting with the CEO of The Royal’s Foundation to discuss what to do with the money. We decided to set up the Madison Capaldi Research Fund (MCRF) in her memory and have the fundraising ongoing. It’s now in its 18th year.

Our first big event was a ball on the first anniversary of Madison’s passing in November 2005. We had around 400 guests and raised $55,000. I remember feeling overwhelmed but excited because we knew we were onto something. From that moment on, fundraising became our passion.

We spoke to doctors at the hospital about where the money should go and they told us you can have all the equipment in the world, but you also need medical research. A huge focus for us has been funding research into NEC, the disease that killed Madison, so other families don’t have to suffer like we did.

In the past 18 years, we’ve held events every two to three years for the MCRF and have raised over $600,000 for The Royal in the process. We’ve hosted balls, cocktail events, raffles, corporate golf days and garage sales. We love doing things that bring people in the community together and for them to know it’s all down to one little girl.

In 2018, Joe and a group of 13 trekkers completed the Kokoda Trail. We raised over $160,000, which funded a BabyLeo Humidicrib for the NICU and a surgical package. It was the first time we’d raised money for equipment instead of research, but the NICU needed one of these state-of-the-art machines at the time and it felt just as rewarding to deliver it to them.

The Kokoda Team. Image: Supplied.

Joe wanted to do something tough like Kokoda because of what those babies go through – hard yakka is his mantra as the babies go through an enormous amount of pain. This ethos has carried through to our next challenge, possibly the toughest yet – 24 trekkers are taking on Everest Base Camp later this year.

The Everest base camp team. Image: Supplied.

Charlotte is a huge part of the MCRF. She’s now 18 – as Madison would be – and has honoured her sister through the fund her whole life. She’s helped out since she was a little girl, fixing lapels onto guests at functions and selling raffle tickets and chocolates. She also gave speeches about the MCRF throughout her school years. It’s very much a family affair with our son Noah, 14, joining his dad to trek Everest Base Camp.

(Left) The Capaldi family with Ben Fordham who emceed their 10th anniversary ball. (Right) Charlotte and Noah training for their trek. Image: Supplied.

What’s been so rewarding is seeing how the research is making a difference. We were fully prepared not to see results in our lifetime when we decided to focus on research, but it’s gone gangbusters in the past few years. In 2015, we funded a trial which looked at withholding feeds during blood transfusions in premature babies and babies with NEC. It resulted in a national multi-centre research trial, the WHEAT Trial, which is now global with Canadian and UK hospitals joining. The fact the research is now globally recognised is so exciting and we’ve seen doctors make remarkable progress in detecting NEC, which spurs us on.

I have such a strong connection to the hospital as it was the only home Madison ever knew. The people there are like family to us. We’ve kept in touch with nurses and doctors who looked after the girls and even attended one of the nurse’s weddings who stayed with Madison until the end.

Every time I reflect on what the MCRF has achieved, I’m totally humbled. Madison has helped us create something enduring and special. It will always be a part of our future and part of her everlasting legacy.

To donate to the MCRF Everest Base Camp Trek and raise funds for lifesaving NICU research at The Royal, please visit their website.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24-hour support line on 1300 072 637. 

You can download Never Forgotten: Stories of love, loss and healing after miscarriage, stillbirth, and neonatal death for free here.

Feature Image: Supplied.

Calling all parents! Take our survey now to go in the running to win a $50 gift voucher.