Not many mothers anticipate having a child born with a rare genetic condition, never mind two children. Essex-based Emily Sibley found herself in this position seven years ago when her son Ricky was born.
Now, full-time mum Emily, who is also a mother to four-year-old Freya with her partner Ricky Howe, tells her story to HELLO! as she shares the positive impact Great Ormond Street Hospital (GOSH) has had on her family this Mother's Day.
© Emily SibleyRicky's birth
It was during Emily's 20-week scan with Ricky at Basildon Hospital in May 2018 that she was first told something was wrong. "He had a brightness on his bowel and they said it could be a sign of Cystic Fibrosis (CF)," Emily remembers. "We were really shocked."
© Emily SibleyCF is a condition that can cause breathing and digestive problems. While there is currently no cure, there are medications to help with battling infection. In June 2018, Emily noticed reduced movement in her unborn son and was referred for extra scans and kept in hospital for monitoring. She and her partner Ricky had blood work done that revealed that they both carried the CF gene.
When doctors discovered Ricky's bowel had perforated, Emily went for a weekly scan at the hospital. She also had extra fluid that needed draining. However, on the day she was meant to be getting the fluid drained, Emily went into labour.
"It was terrible," Emily says. "It's scary because you just don't know what the outcome was going to be."
© Emily SibleyRicky's bowel was operated on during his second day of life at Norfolk and Norwich Hospital, where he remained in intensive care for three months. Ricky was diagnosed with Cystic Fibrosis at two weeks old.
Meeting the staff at Great Ormond Street
Ricky was first admitted to Great Ormond Street Hospital (GOSH) in November 2017, spending two weeks in intensive care and a week on the ward after contracting bronchitis.
© AlamyWhen he was just three-and-a-half months old, he was rushed back to intensive care after he started having difficulty with his breathing.
"The first year of his life was the worst, in and out of hospital. Catching all sorts of infections," Emily says. “Ricky's dad would get the train every day after work to visit us in hospital.
© Emily Sibley"We were all tired. I used to cry when he left every day," Emily recalls. "We all felt different emotions – I'd never spent any time in hospital before having Ricky and I just couldn't cope with it."
Ricky got chest infections regularly as he was born prematurely at 32 weeks. He spent a lot of time during the first year of his life at GOSH with complications related to his Cystic Fibrosis diagnosis.
© Emily SibleyBut the staff on hand provided the support the family needed. "They were brilliant," Emily recalls, explaining how in September 2023, Ricky began a new treatment Kaftrio and Kalydeco - a tablet he takes every day. It helps with improving quality of life and has reduced Ricky’s hospital stays. "Some of the nurses are still there now and they feel like family."
© Emily SibleyEvery three months, Ricky has to spend two weeks at GOSH for treatment for the conditions. The treatment involves two weeks of IV antibiotics – Caftazidine every eight hours and tobramycin once a day on an IV pump for 30 minutes. He also has a 7% nebuliser with physio after. Once at home, Ricky has physio every day and two other nebulisers twice a day.
Freya's story
In November 2019, Emily fell pregnant with her daughter Freya, who was also diagnosed with CF at two weeks old. "The day I found out I was so upset. I was so emotional, I just kept crying," Emily says. "But then the next day I was fine because I thought, 'I'm already going through it with Ricky, nothing's going be different. I know what I'm doing'."
© Emily SibleyThe staff at GOSH explained the importance of keeping on top of Freya's medication to prevent her from catching an infection from Ricky and vice versa. However, Freya, who was born in August 2020, caught bronchiolitis the December after she was born, meaning she spent her first Christmas in GOSH.
© Emily Sibley"I was really dreading it because when you are sick at Christmas, you just want to be at home with your family," Emily says. However, the staff at GOSH made it as special as possible.
© Great Ormond Street Hospital Charity"They brought really lovely presents around for Freya and they'd give us tickets so we'd go out to the canteen and get a Christmas dinner. It was really nice," she recalls.
The Play team at Great Ormond Street
With Freya being admitted to GOSH every three months and Ricky every six months to receive IV antibiotics to sustain their immune system, they have also benefited from the Play team, funded by Great Ormond Street Hospital Charity (GOSH Charity). "They are brilliant. They come into our room at least twice a day to make sure the kids have got toys, make sure they're not bored, and if they are, they do painting or bring a toy in," Emily says.
"The team always say to me, 'You can go out and get a coffee, go have a walk around, get some fresh air, I'm fine sitting here with Freya or Ricky'. They're really lovely."
With Freya and Ricky both having experienced periods of ill health and time in hospital, Emily is proudest of how they support each other. "Freya watched Ricky go through it all, and now she's not as scared," their mother says.
© Great Ormond Street Hospital Charity"I know when they get older they can ask each other stuff. I know that Ricky will help out because he'll be the oldest, he knows about it a little bit but they will be so good for each other."
GOSH Charity exists to give seriously ill children the best chance and the best childhood possible, until no childhood is lost to serious illness. To find out more or to donate, visit gosh.org/
