Danielle from Plymouth gave birth, to her now 4-year-old daughter Ophelia, in February 2022. She is a single parent and was prepared to take on being a single mum going into the pregnancy.
Ophelia was born full term, but she was taken into NICU (Neonatal Intensive Care Unit) straight from birth as she had stopped breathing.
A brain MRI revealed that her brain hadn’t developed properly during pregnancy and she was going to have a lifelong disability.
Danielle and her daughter stayed in Derriford hospital for 8 weeks, where Ophelia began to have seizures, and was diagnosed with epilepsy. She also wasn’t feeding from a bottle, so was fitted with an NG tube through her nose.
When the pair finally returned home, the first 6 months was a period of uncertainty for Danielle. There were lots of hospital appointments, and when Ophelia turned 10 months old, she needed a full-time supply of oxygen.
“I suppose I am downplaying it a bit because the first year was rough”, said Danielle.
It was really bad. I didn’t have any care at home; it was just me. The seizures she would have… it was all day and all night. She’d have about 40 seizures a day and she was projectile vomiting a lot. She was difficult, it was like having a newborn baby effectively for a whole year.
Ophelia began to have random episodes where she would stop breathing due to an obstruction in her airway and would need resuscitation.
“She has nearly died quite a few times”, said Danielle.
Ophelia uses a CPAP machine between 2 - 8 hours day to help give her a steady flow of air and keep her airway open while she is sleeping, she also has oxygen 24/7.
Ophelia can’t walk so uses a wheelchair, can’t talk, and can’t feed herself so has a gastrostomy. She still has seizures and has urine issues, so is catheterised.
Danielle and Ophelia had their first visit to Little Harbour when Ophelia was 10 months old.
Danielle was hesitant to come to the hospice at first: “Everyone hears the word ‘hospice’, and it is not necessarily a nice word for people to think about. I didn’t really know anything about children’s hospices, so I was really unsure. I was offered a couple of stays which I said no to.”
Danielle said: “It’s been difficult. But we’re at a point now where she’s been really well.
If you’d have asked me this time last year where we would be, if I’m being totally honest, I probably would’ve said she wouldn’t be here anymore.
“She has surpassed every doctor’s expectation of life expectancy. She’s been really well over this year.”
Danielle has an improved support system in place and is now having regular visits to the hospice, despite her uncertainty at first.
“We have come to the hospice so many times now, especially last year when Ophelia was really poorly. She nearly came down to the hospice a few times for end-of-life care and then just by chance, she ended up not needing it. It’s been a lot.”
Danielle now feels that she has a lot more time to breathe and is no longer in a ‘panic place’ wondering if her daughter is going to make it to the end of the week.
When Danielle first came to Little Harbour, she thought it was amazing. Their first visit was between Christmas and New Year and they both had a lovely time. Due to Ophelia’s complex needs, Danielle can find it difficult to trust other people with Ophelia’s care, but she felt very relaxed and at ease.
“Although every child is different, the staff have so much experience and they’re really willing to listen to what I had to say about Ophelia”, said Danielle.
They make her feel really comfortable and safe, which makes me feel comfortable and safe. Some of the nurses have really got to know Ophelia and have been with her since the start, so it is nice to be able to build individual relationships with staff members who have been here the whole time, and new members as well. Everyone here is lovely.
Little Harbour is one of the few places where children with complex needs and their families can do activities like swimming and soft play in a safe, accessible environment. Families often don’t have the time to do these things, outings can be very stressful and risky for children with compromised immune systems.
“It’s hard sometimes to organise things like swimming for children like Ophelia because there is no way I could take her to a regular pool”, said Danielle.
“She’d be outraged by the temperature of how cold a regular pool would be!”
Ophelia’s favourite things at Little Harbour are the pool, the sensory room and the big bubble bath. She also loves cuddles, which she gets a lot of.
Danielle loves having the time at Little Harbour to enjoy the home cooked meals and being able to relax..
Although they’re there to look after Ophelia, you do feel looked after here as a parent as well.
Although a single mum, Danielle has had good friend Clare by her side since Ophelia was born. Danielle and Clare met in the Navy 13 years ago and Clare not only went to antenatal classes with Danielle but was also her birthing partner.
Inspired by Ophelia, in 2024 Clare took part in Ride for Precious Lives, Children’s Hospice South West’s (CHSW) annual 3 day cycling event. She rode as part of ‘Team Goose’, an affectionate nickname for the little girl.
Clare looks after Ophelia 3 days a week and comes along to Little Harbour with the family.
Despite telling Clare they wouldn’t be able to make it; Danielle and Ophelia surprised her at the finish line of Ride for Precious Lives 2024 at Little Harbour which was very emotional for Clare.
Following this Clare convinced Danielle to join Team Goose for the event in 2025, Despite Danielle never having cycled before, they completed it together, and they will be taking the event on again this July.