‘We were there with baby Evie until the end — that is a privilege’

From early on, Brana Gadsby and Ross Worth knew their time with their daughter Evie would be all too brief. Here, they tell Kirsty Blake Knox, about losing their firstborn child and giving birth to their second daugter, Riyah, three weeks later

Even before they were a couple, Ross Worth and Brana Gadsby knew they shared a similar vision for the future. They both wanted to live in the West of Ireland, and they both wanted children. The two had mutual friends and over the years stayed in contact via Instagram.

“My friends would call him the ‘dog meme guy’ because that is what he would send me,” Brana laughs.

They started dating in 2019 and continued their relationship when Brana, who worked as a general nurse, moved to New Zealand.

However, after three months, Covid took hold and the world started to move into lockdown. So she returned home and the couple moved in together. Seven months later, they were overjoyed to discover they were expecting.

At this stage, Covid restrictions were still in place so when Brana went for her first scan, Ross was unable to go into the hospital and waited in the car outside.

The scan took longer than anticipated and, after lots of “faffing about”, the sonographer told Brana there was a heartbeat, but also a thickening on the baby’s neck.

There were several explanations for this: if a pregnant person has spent time with a baby with parvovirus B19 (commonly referred to as ‘slapped cheek’), or if they have come in contact with toxoplasmosis — a parasite found in uncooked meat — or it could be chromosomal.

“At that stage we were just trying not to worry; we weren’t being told anything too negative. We just wanted to meet her,” says Ross.

Further scans showed fluid around their baby’s body. This could indicate hydrops fetalis, a life-threatening condition. To find out more, Brana had an amniocentesis — where they remove and test cells from the amniotic fluid.

“First pregnancy, first baby — we just wanted to know for sure what was causing this,” Brana says.

Their consultant called days later and informed Brana and Ross that their baby had Trisomy 21 — Down syndrome.

“That was the result we were hoping for,” Ross says.

The couple next began educating themselves about Trisomy 21 and connecting with communities online.

“It’s a much nicer place to go rather than Google because you see people’s actual lives and their kids,” Brana explains.

Ross adds, “As opposed to a list of things they will never do.”

At 19 weeks, another scan showed their daughter, Evie, had a serious heart defect, AVSD (atrioventricular septal defect), where the valves of the heart have not formed properly. She would later also be diagnosed with hypoplastic right heart syndrome, where one side of the heart is not as developed as the other. This drastically reduced the likelihood of survival.

Brana and Ross were referred to the Coombe and placed under the care of Dr Orla Franklin. At each scan, the news became more sombre and projections regarding life expectancy decreased.

Again, due to Covid restrictions, Ross was unable to attend almost all of these appointments and had to wait in the hospital car park outside.

“We were being told that Evie shouldn’t have survived based on all the scans we were having, and the likelihood of her being born alive was getting lower and lower,” Brana says. “Ross was sitting in the car waiting to hear if she was alive, basically. That was a big struggle. And there was nothing we could do about it.”

Ross adds, “It is not the fault of the consultants either, or anyone else. Everyone was good about it but they were locked by these policies that in hindsight had no wiggle room, for no real reason.”

Despite all the odds, their daughter continued to grow, and the couple moved closer towards the due date.

“They had prepared us and had made it very clear that they were not optimistic that she was going to make it to birth,” Ross recalls. “So we were aware this may be what happens, if not at the delivery, then soon after.”

Brana adds, “We thought, ‘Oh my god, we have actually got to this point and her heart is still going.’ We didn’t know what it was going to look like when she was born.”

Their daughter, Evie Worth, was born on July 31, 2021. Amid Covid restrictions, Ross had been told he couldn’t touch her, as she was high risk, but he reached out after she was born and placed a finger on her hand. “Like ‘here I am’.”

The arrival of Evie immediately changed the couple’s world — not only with the volume of love she brought into it, but how they approached life.

“Joy. She was a joy baby,” Brana says. “Determined and super gentle, sweet. Evie was kooky and silly, and cuddly, and all the good things. Lots of smiles.”

She inspired Brana and Ross to take life in “micro-steps” and be present in the moment, rather than dwelling on the bleak prognosis.

“Because of everything, we still don’t look too far into the future,” Ross says. “You’d think, ‘I will deal with that if that ever happens, but right now I am not going to entertain that idea...’ I had this notion that I am not going to grieve for her before she is gone.”

The couple were keen to bring Evie back to their home in Sligo. They were discharged and for six weeks cocooned and cared for their daughter.

It was difficult for Evie to gain weight, so they made the decision to use a nasogastric tube to feed her.

“We had tried so hard with feeding, breastfeeding and bottles, and it was getting to the point where we needed her to be comfortable and live her little life because we didn’t know how long we would have with her… It made such a difference — she had more time to just be a newborn baby.”

When Evie was eight weeks old, Brana and Ross noticed a shift in the tone of conversation with the medical professionals.

Ross recalls that it went from being “morbidly uncertain to being positively uncertain”. “In my mind, I found it easier because they didn’t know what was going to happen.

“We didn’t know what was going to happen — Evie was going to write the story here. And that was a very positive thing at eight weeks.”

Things remained relatively stable and Brana began sharing vignettes of their life online, and found the internet community she connected with to be invaluable support.

Sharing on social media was also about advocacy. “It was to show that babies like Evie and the people they grow into are not suffer

‘It was really hard to think of Evie as a sick baby, because she was so full of life and fun’

ing. They are not a burden,” she says. “There are stereotypes and labels, but in reality it is just your baby. And you are living your life with your baby.”

When Evie was five months old, things took a turn when she contracted a common cold. Her parents brought her to hospital, where it was discovered that her oxygen levels were dangerously low. She was admitted to Crumlin Hospital.

“Then it was like a cascade,” Brana says. Evie’s health deteriorated and medical professionals were not confident she would survive. During this time, Brana and Ross had to have some impossibly hard discussions.

“Like do we do organ donations if she does die… these conversations that you never expect to be having,” Brana says. “We also had lots of conversations about how much joy she had already brought us. We didn’t expect to get that time at all. The impact she had on us, I think that’s how we got through it.”

Unexpectedly, Evie began to stabilise and was moved from ICU to a ward, and things improved.

“I couldn’t even describe how much she bounced… she was a totally different child,” Ross recalls. “We started having conversations about bringing her home. And again, we didn’t know how long we would have her at home.”

After four weeks in hospital, they were given a CPAP mask (continuous positive airway pressure) to help stabilise Evie’s oxygen levels. “The CPAP became our friend because it was keeping Evie alive,” Brana says.

Bringing Evie home meant bringing home more medical equipment to accommodate her needs. “We had gotten used to the NG tubes and the syringes, but now it was like suction machines, nebulisers and these big oxygen condensers,” says Brana.

Evie kept steadily improving. Each day she seemed to be a bit stronger and needed less time with the CPAP mask. While they had been in ICU, the couple had discovered they were expecting their second child, but tragically Brana suffered a missed miscarriage when they returned home.

They became pregnant again shortly after this, and established a routine to ensure Evie was as comfortable as possible.

“It was really stressful,” Ross recalls. “But when you have a schedule, you have a rhythm you get into and you get a balance that works. After a couple of months, we even started taking her outside, originally in the buggy with the oxygen tanks and then in the carriers with oxygen tanks in our backpacks.”

The windows outside were small, but for Brana and Ross, who are very outdoorsy, they created profoundly positive memories.

They brought Evie with them when they went to a wedding in Scotland, and their converted VW van meant they could bring her equipment when they went on trips to the beach.

The little family reached a significant milestone at Evie’s first birthday. They held a party outside their home, as they knew it would be the safest way to celebrate.

Some of the families they had met on Instagram travelled to celebrate Evie. “She had hit a good point and maintained that for a really long time,” Ross says.

“At this stage, she had a tube and oxygen. But it was really hard to think of her as a sick baby, because she was so full of life and fun. She didn’t behave like a sick baby. Anyone else looking at her would think, ‘That’s a really sick baby,’ but we didn’t see it like that… her personality was bubbling and she was hitting developmental milestones.”

But several months after her birthday, Evie’s condition started to deteriorate and by November “things had become very, very bad”.

“She would drop, she would be purple, she would need high-flow oxygen put back on,” Brana says. “It got to the point where we realised the mask was not enough.”

Evie was put on a higher dosage of medication but things continued to worsen. At this time, Brana was heavily pregnant with their second daughter, Riyah.

At her 38-week scan, her consultant asked if she would like to undergo a C-section to ensure the two sisters could meet. “I was like, ‘I can’t think like that because I need to be able to give my whole self to Evie. I can’t think about having a newborn at that time.’”

The couple worked with a palliative-care team and devised a plan if things were to rapidly decline. They were adamant they wanted her to spend her final hours in their family home.

“We had decided we wouldn’t be bringing her into the hospital, that we wanted to be at home. I am really grateful for that,” says Ross. “I am glad that it was here.”

They stress that the final few days of Evie’s life were not “all doom and gloom”. They spent most of the time telling their daughter how loved she was.

“I was so pregnant and she just wanted to be held the whole time,” Brana says. “Her godmother called over and said, ‘Evie is such a little scamp because she would make you think nothing is wrong.’ She kept her little spirit up the whole time.

“It was a really special weekend considering it was such a heartbreaking weekend. If you could plan the death of your child, that would be how you want it to be. We got to say goodbye and talk to her and sing to her and love her. It wasn’t sudden — it was very apparent that it was coming.”

The day I meet them, Brana talks as she plays with her daughter Riyah, who is giggling in a canvas tepee. Brana believes there is something surreal and sacred in death.

“When I worked as a nurse, I gravitated to palliative care. I would be dealing with a lot of people who died and were in their final moments. And I have always viewed it as such a privilege,” she says.

“We celebrate birth and someone coming into the world and taking their first breath. But [there’s] the beauty and surrealness of actually being there with someone when they are dying and they are comfortable. You are with them and you are holding them; there is a privilege in that. And that was probably the main thing that I felt at the time. Horrendously devastating as it is, we got to be there with her, and she got to feel us with her.”

Three weeks later, their daughter Riyah arrived.

“A friend of mine asked me before, ‘What were those three weeks like?’” Ross says. “And it could have been three days. I don’t know what we would have done without her.”

The couple say Riyah allowed them to put their “thoughts and actions into something positive and productive”. “Otherwise I don’t know what state we would be in,” Brana says.

Brana and Ross talk about Evie constantly and want to remind people that children with life-threatening illnesses can lead extraordinary, fun and deeply happy lives.

“Their lives are worth living,” Ross says. “Just because it’s short doesn’t mean it is not important… these people have worth just like the rest of us.”