When Alice was born at 34 weeks, the doctors delivered devastating news to her mum and dad – their newborn baby girl had just 20 minutes to live.
Barry and Rebecca had known their daughter was at risk since their 20-week scan had picked up problems with her skull and jawline, with serious implications for their unborn baby’s safety. But they could never have imagined the difficult road that lay ahead of them.
In today's #FamilyFriday, Alice's mum tells the story of how Tŷ Hafan came into their lives and the impact it has had on the family as they adapt to living with a life-limiting condition.
“At 30 weeks they said I was at risk of premature labour due to severe polyhydramnios (a build-up of fluid in my stomach) which could kill me and Alice.
“She was born at 34 weeks. They got her out and she was crying. Everyone was relieved. But within minutes of her birth she needed an emergency tracheotomy. Then she took a turn for the worse and they said we were going to lose her in 20 minutes.
“Thankfully she pulled through. It was a relief to get her home but quite scary as well – we had to bring home all this equipment and needed 24-hour care.
“She had only been home for ten days when she caught a cold – she was being sick and her heart rate and stats kept dropping. She was rushed into hospital, to the Paediatric Intensive Care Unit, where her condition deteriorated rapidly.
"She picked up enough to return to the High Dependency Unit for her first Christmas. But just after New Year she got bronchiolitis.
Once again, the doctors said we could lose her. We were told to prepare for the worst. We were terrified. We had an emergency Christening for her and were referred to Tŷ Hafan for end of life care.
"Alice’s condition improved. But she wasn’t yet out of danger – she needed surgery to remove her middle lobe on her right lung which was pushed to one side, squashing her heart and her stomach.
"Two weeks after surgery, Alice returned home for good. She was diagnosed with Goldenhar Syndrome, which is a rare congenital condition, with micrognathia and possible trigonocephaly, which is where the plates in the upper skull fuse together permanently. Both will require major surgery.
“Alice is almost three now and she’s extraordinary. Three years ago I was in the assessment unit, panicking that I could die, Alice could die, my daughter Scarlett would be without her Mummy, my husband Barry would lose his wife and his baby and be left to bring up Scarlett alone.
“Now look at her. They said she would have no brain activity – and they’ve just done tests and she’s ahead for her age and is due to attend mainstream nursery. The doctors see her now and don’t believe it’s the same child.
"It's not just doctors amazed by her but the nursing staff, community teams, family and friends.
“We started going to Tŷ Hafan last year and haven’t looked back. We go there for short break care, day care, music therapy and complementary therapy – we get some of the services at home too. When we go to Tŷ Hafan she runs in, shouts ‘I’m back!’, finds her favourite toys and investigates her room, which is usually decorated fit for a Disney princess. She loves it.
“Tŷ Hafan helps us because Barry and I get time together as a couple and with her sister Scarlett. We get to have a break and not worry; we come back really relaxed.
“Tŷ Hafan provides us with the sort of life opportunities we wouldn’t otherwise have had – we’ve even been on a family holiday thanks to them, which is something we thought we would never do.”
Alice's full story features in this month's Cwtch magazine, due out on Monday.