"Once you’ve had a diagnosis like that...don’t do it alone"

Monday 07 June 2021

The mother of a young baby with a serious heart condition, has spoken out about her experience living between home and hospital, to show others they are not alone and encourage them to seek support.

Rachel Rabet is mother to Chester, a six-month old boy with hypoplastic right heart syndrome, a condition which means he requires extensive treatment and care.

“When the room goes silent, that’s when you know something’s wrong,” she remembered of being told about the heart condition at a 20-week pregnancy scan. 

Already a mother-of-three, the diagnosis threw Rachel and her husband, John, into a world of uncertainty.

Pictured: With the help of Family First, Chester and his family have been supported financially and practically during their trips away from home to Southampton.

“The excitement of finding out you’re having a baby just changed,” she remarked, saying that questions like “why now,” “what are we going to do,” and “how are we going to cope,” rushed through her head.

Following the news, she kept the diagnosis quiet, saying that “I didn’t tell anyone apart from my parents until just before he was born, because I just couldn’t process it and I didn’t want people’s sympathy.” 

In November last year, Chester was born in Southampton, with Rachel having to stay in the hospital for around three-and-a-half weeks before returning to the island, which was a positive sign considering they were expecting to stay for around two months.

However, in January, Chester’s condition worsened again, having breathing difficulties. Following his going into heart failure, they had to return to Southampton for emergency surgery, where they stayed again for two weeks before returning.

After this, Rachel had to return for two weeks to Southampton with Chester in April for open heart surgery, though this visit was pre-planned.

In between these periods away from the island too, there have been frequent hospital trips in Jersey, creating essentially two lives for Rachel to manage - one at the hospital, and one at home with the rest of the family.

Pictured: Chester is currently in a stable condition, with Rachel noting that "he's a really happy little boy."

Explaining living in this 'back and forth' state, Rachel said: “It’s hard because you can’t find any sort of normal; you’re just settled in at home, out of isolation and we’ve got our kids back at home… and then I’m back in hospital [or] away for surgery - it’s lots of coming and going.” 

Indeed, Chester’s vulnerable condition has meant they have had to be careful about where they go as a family and what activities they choose, both in terms of covid risk, and more practically, prices, suggesting that local businesses could help families in similar situations to reconnect, with gestures like vouchers for trips out.

“It’s these little things, even cinema trips, when you’re constantly back and forth, you can’t afford to do those - just having time as a family,” she noted.

She also stated that while he is doing “really well” now, the basic fear for Chester’s day-to-day health always is there at the back of her head: “How do you process that, the fear of losing your child?”

However, right from Chester’s birth to this day, Rachel has credited the community nurses in Jersey, alongside local charities Friends of SCBU and Family First, for providing much-needed financial and practical help to let her focus on her family.

Video: Family First have been helping islanders who need off-island treatment for three years now.

Founded by the Grace Crocker Family Support Foundation - which Rachel has also been receiving support from - Family First are a charity on the island that provide financial and practical help to families with a child who needs medical or mental health treatment off-island.

“Once we found out about his heart condition, we got in touch with Family First, and then we met [Family Liaison Manager Cheryl Dolbel], who was absolutely amazing,” Rachel explained. 

Cheryl helped keep them in the loop about the latest covid restrictions, and made sure her children back home had their food paid for when they stayed with their grandparents whilst she and John were away.

"She took all our worries away about how we’re going to afford to travel, about food, making sure our bills our paid, where we’re going to stay, she sorted all of that out for us.”

Pictured: Following his open-heart surgery in April, Chester will hopefully not need any more surgery for another few years.

The charity also paid for Rachel’s sister to accompany her to Southampton when husband John was unable to come back in January, sorting out hospital wards, accommodation and basic needs like food costs for them.

Having seen an uptick in referrals recently, the charity are now seeking to add extra staff to support more families, and on their third birthday have set up a fundraiser with a target of £15,000.

Speaking of the important role they’ve played in Chester’s story, Rachel added: “I didn’t realise how important a charity like Family First was until we needed them… [they’ve] just took so many worries away from us, I can’t thank them enough.”

Though he has had some difficulties with his breathing recently, following his open heart surgery in April, Chester is now in an overall stable condition.

“He’s doing really well - he’s a really happy little boy,” Rachel said, remarking on the way he always seems to address a situation with a smile, even when he was in Southampton for surgery.

Though Chester is doing well, she highlighted that she is still coming to terms with the new life the family are living, and wanted to get across to other parents going through a similar situation that “it’s okay not to be okay.” 

“Just ask for help, don’t be afraid to talk to somebody; don’t be ashamed, because at first I was like - ‘I’m fine, I don’t need to talk to anybody’ - but I really do.”

She added: “Once you’ve had a diagnosis like that, you need to give yourself time to process it, and don’t do it alone – even if it’s a small circle [of people], don’t bottle it up.”

Going forward, Rachel is confident of one thing - that Chester has his family by his side always.

“We don’t know what his future holds, but for us it was his path to take, and we’re going to be there to support him throughout,” she said.

“No matter how long his journey is, we’re going to be there for him.”

You can donate to Family First’s fundraiser by CLICKING HERE.