Meet Robyn and Rosie

Born at 27 weeks. Separated for months. Held for just one hour a day.

In July 2022, Robyn and Rosie were born prematurely at just 27 weeks.

10 days after birth, Robyn developed a serious condition called necrotising enterocolitis (NEC), where tissue in the bowel becomes inflamed. She needed urgent surgery and was rushed to a specialist hospital in Southampton whilst her twin sister Rosie remained in Portsmouth.

During this time, their mum Tori was torn between two hospitals, constantly travelling backwards and forwards, worrying about her babies being alone in hospital.

“I could only hold each twin for an hour a day. Then I had to put them back in the incubator. It was heartbreaking.”

As their mum Jess had to keep working to support the family, Tori’s mum looked after their older daughter Rhyley.

“Rhyley was only two. My mum helped with her as much as she could, but it was non-stop. Everyday I’d see Rosie in Portsmouth, then travel to Southampton to be with Robyn, then rush home to be with Rhyley.”

The hospital referred the family to Rainbow Trust, and they have been supported by Family Support Worker Michelle since October 2022.

“Michelle didn’t just help me. She helped the girls too. She spent time with them, talked with them and reminded me I wasn’t alone.”

At six months Rosie was discharged but Robyn remained in hospital for another four months after contracting an infection, which resulted in a diagnosis of short bowel syndrome. Robyn had her large bowel removed and now has only 40% of her small bowel remaining.

“It was so difficult. It was the stress of being torn between the siblings. When I was in hospital I wanted to be at home with the others, but when I was at home, I wanted to be in the hospital. I was literally choosing what child to be with and that’s very difficult.”

While Robyn was in hospital, Michelle visited on days when Tori could not be there, ensuring Robyn had a familiar presence, giving Tori and Jess peace of mind that she was not alone.

Michelle also supported by entertaining Rosie during hospital visits, allowing Tori to spend valuable one-to-one time with Robyn.

“Life with Michelle is less stressful. The time Michelle spent with Robyn in hospital when I couldn’t go in meant the world to me.”

Michelle also supported Tori in coping with the stress of having two babies in hospital, helping her manage the overwhelming amount of information and understand complex medical jargon. She also assisted with paperwork and applications, such as for Disability Living Allowance and the Blue Badge.

The time Tori spent in hospital with Robyn and Rosie also had a significant impact on Rhyley. Tori found it difficult to explain what was happening and why Rhyley’s life had changed so drastically.

“Rhyley was not allowed to visit the hospital so there was no bonding time for the children. As I was breastfeeding, I could take Rosie into hospital but then I had to leave Rhyley at home. That’s what she saw; that I was taking Rosie but not her.”

Michelle’s support has allowed Tori to attend appointments, and she also spends time playing with the children, giving Mum a much-needed opportunity for respite.

I have no time anymore. Everything has changed. I used to be able to do things with Rhyley but there’s just not the time for that anymore. Michelle comes round to play with Rhyley and takes her out for fun days out. This ensures Rhyley doesn’t miss out on childhood experiences or opportunities to socialise with other children.

Tori, Robyn and Rosie's mum

Michelle also helps to ensure Rhyley does not fall behind with her education by helping with school pick-ups and Rhyley’s homework.

The family have enjoyed days out organised by Rainbow Trust to places such as Paultons Park, farms, Sensory for All, and Arthur’s Play Space.

Trips out can be challenging for Mum on her own due to Robyn’s medical needs, so Michelle provides support to ensure the whole family can enjoy time together.

The family also regularly attend Rainbow Trust drop-in sessions, where the children can play and Tori has the opportunity to relax knowing her children safe and supported.

Robyn’s hospitalisation and continued treatment has impacted Tori’s relationship with her friends and family. Robyn is fed through a central line every night for 12 hours and every day must be carefully timed.

“We can’t just pop to someone’s house for dinner or be spontaneous. Every day is structured, and every medication is timed. It’s become our new normal. It can be isolating. But Michelle is always there for a chat. It is also nice just to have someone to offload to and talk to about my concerns.”

Michelle helped me leave the house again. Even something as simple as walking to the park felt scary before. But doing it with her made me realise I could. I wouldn’t have coped without Michelle.

Tori, Robyn and Rosie's mum

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Robyn and Rosie's Story

Meet Robyn and Rosie

Continued support for a family for as long as they need us