Following a devastating diagnosis during pregnancy, parents Helen and Ben didn’t think they’d get more than a few hours with their baby. But Orla came out fighting and the family spent three days together, making precious memories they’ll never forget.

“We’d lost a child previously from Jeune Syndrome and there was a 1 in 4 chance this baby would have the condition too,” explains Helen.  A scan at 16 weeks showed their baby’s chest was small and they were referred for further tests which confirmed Jeune Syndrome. Helen and Ben were given the option of ending the pregnancy, but chose to continue. “Jeune Syndrome is a spectrum. You can have it quite a mildly where you have smaller lungs than average but they’re be able to function, right to the severe end of the scale where the baby can’t take a single breath.”

The family were referred to Shooting Star Children’s Hospices by their midwife. “We had a look round Christopher’s and we really liked it. Finley, our 4-year-old son, loved it. We were told we’d be able to go there after Orla was born whatever happened. Either way we decided it would be the best place so Finley could have memories of her at the hospice rather than see her die in hospital and be scared of hospitals. At the time I was feeling optimistic and I’d convinced myself she’d be ok and wouldn’t need the hospice. But then we had an MRI which confirmed her lungs were too small to be able to survive.”

The family were told palliative care was the best option. “It’s a battle in your head – you want to throw everything at your child to give them a chance of survival but then you don’t want them to survive and have a life of suffering. The doctors all felt that active intervention would have only given her a few days and those days would have been on a neonatal unit with tubes everywhere, which wouldn’t have been any life. In the end we got to have three days at Christopher’s with her which we never thought would happen. She was surrounded by her family getting to see and do things we never dreamt possible. The best case scenario we’d allowed in our head was she’d be born and we’d go straight to Christopher’s and she’d pass away quietly within hours, but she came out breathing. We stayed in hospital initially because we hadn’t expected her to be alive and we wanted to make sure there wasn’t anything that could be done.”

When it was decided palliative care was still the most appropriate course of action the family transferred to Christopher’s. “We went in the Sensory Room and the garden, Finley played music on the pipes and sang to her, she went on the roundabout with him and I sat on the edge of the trampoline with her while Finley was bouncing. We have so many lovely family memories at Christopher’s.”

Orla passed away peacefully in the Sensory Room surrounded by her family.  “We took her to the Mistral Suite and we all went to say goodbye. Staff organised for Orla’s heart valves to be donated, which will go on to help two people with heart conditions.

“We stayed at Christopher’s for another week. Finley had loads of fun while my husband and I got to spend time with Orla. The team helped us create memories and keepsakes – hand and foot prints, photos, casts, finger and thumb prints and a lock of hair. We treasure them all and they help keep Orla’s memory alive.

After the funeral we went back to Christopher’s to let balloons off and that’s one of the things Finley really remembers. He rarely gets upset because he remembers Orla with happy memories.”

Following Orla’s death, Helen has accessed Shooting Star Children’s Hospices’s counselling service. “The counselling has been really good so far and I’ve also received lots of useful advice about how to help Finley.”

The family have since raised thousands of pounds for Shooting Star Children’s Hospices. “Fundraising has given me a focus. While we were staying at the hospice I signed up for the London Marathon – I needed a goal and I wanted to give something back.” Helen and Ben have also organised a Halloween party, done a sponsored run dressed as pumpkins, taken part in our Fire Walk and organised Run for Orla – a virtual run which saw participants from as far as America and Australia run in her memory. “I wanted something positive to come from Orla’s death,” says Helen. “We’re never going to get Orla back but we don’t want her loss to have been for nothing. It’s a nice feeling for us to know all these people now know about her and are aware of what the hospice can offer.

“When you’re only going to have such a small amount of time you want that time to be as good as it can be. There isn’t anything we look back on and wish we’d have done differently. Given the circumstances it couldn’t have been any better, Shooting Star Children’s Hospices gave us three days together with Orla getting to see and do things we never dreamt would be possible and creating family memories we’ll never forget.”

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