In her first years of life, Orla had cardiac arrests at home with her terrified parents forced to give CPR on their living-room floor. Now the family are getting on with life, thanks to the support of Keech Hospice Care.
“Orla’s three and a lovely, cheeky little girl - we’re so proud of her. But it’s devastating to see other children her age and know she’ll never be able to do all the things they can,” said Orla’s dad, John, 34, from Luton.
“Our daughter’s spent most of her life in hospital – for a year and a half we couldn’t be at home for more than a few days at a time. She’s had open-heart surgery seven times, the first time when she was just three weeks old. It was terrifying for my wife, Tina, and me. In all honesty, there were times when the doctors didn’t think Orla would make it.
Orla was born with DiGeorge syndrome. We’d never heard of it, but we now know it’s a rare genetic illness caused by a missing part of one chromosome. It means she has severe heart problems and, in 2016, she had to have a breathing tube fitted into her throat which she relies on 24 hours a day to keep her alive. The tube makes it almost impossible for Orla to speak which is hard but we’re helping her learn sign language, so she can talk to us.
Always a risk
Having her tube fitted has helped us cope better at home. But there’s always a risk that even something as simple as a cold will make Orla seriously ill and we’ll end up back in hospital again.
Because of her illness, Orla has to have a carer go to nursery with her every day and a nurse watches over her every night. As a family, we’re rarely alone. There’s someone with us most hours of the day and night. It’s hard constantly having healthcare professionals in your home. We get so little time just to be a family and do the normal things that other families do without a second thought.
Keech never forgot us
We first visited Keech Hospice Care when Orla was very young, and we used the charity’s amazing hydrotherapy pool – Orla always had a great time splashing about in the water. However, not long after she started going to Keech, Orla had a cardiac arrest at home and we spent almost a year in hospital, so we couldn’t continue our weekly visits to the hospice. It was amazing though, because the whole time Orla was in there, Keech stayed in touch and even came to see us at the hospital. We just felt so supported knowing Keech was there and would continue to be so once we were ready to return.
Wonderful first moments
Out of hospital and Orla now loves going to Keech’s Tots ‘n’ Toys activity sessions on Thursday mornings and spending time with the other children there. It’s a great support for me and my wife, too.
Keech just gives us so much that otherwise we wouldn’t have. Orla‘s had amazing days out at weekends with Keech Hospice Care’s play specialist, Jennie, and Sara, one of the fantastic nurses. On these day trips, Orla’s experienced many of her first moments, thanks to Keech, including sitting on a pony, going on a fairy hunt and having a picnic in the park. As a family, we’re given the best care and support.
As a couple, it’s been a difficult and exhausting time - we’re emotionally drained. But Keech Hospice Care has offered us overnight stays at the hospice, which will be a lifeline and give us some time to ourselves, knowing Orla is in safe hands.
It might sound odd but right now it’s like we’re going through a grieving process. Not because Orla has died, but because she’s not the same little girl we had before. She’s so much more unwell than we expected her to be. Orla is wonderful and we’re so grateful she’s with us, but it’s hard knowing she’ll never do everything other children can do. Talking to Steve, Keech Hospice Care’s family-support worker, we finally feel someone understands exactly how we’re feeling. For that, I’m so grateful.
The support Keech Hospice Care gives families like mine is so important just for us to be able to live our day-to-day lives – there’s nothing else like it for Orla. It’s easy to forget it’s a charity. Everyone at Keech is so friendly, and they always see Orla as a person, helping her fulfil her potential. We’ve always wanted as normal a life as possible for Orla - Keech Hospice Care is helping us have that sense of normality.”
What is Keech Hospice Care’s children’s service?
We are the children’s hospice for Bedfordshire, Hertfordshire and Milton Keynes. Every day, our community nurses visit streets near you, supporting seriously ill children and their families in hospitals, in schools or in their own homes. At the children’s hospice itself we offer:
- day support with trips out and activity groups such as Tots ‘n’ Toys
- care from our team of doctors, nurses and therapists
- support services including a play specialist, art and music therapy, complementary therapies, social worker and pre- and post-bereavement support
- in-patient stays
- end-of-life care.
How your donations make the difference for children
In 2016/2017, we supported:
- 317 children and 188 relatives
- 160 children with day support
- 99 children with stays at the unit
- 302 families in their own home
- 19 children with end-of-life care, at the hospice and at home.