Harlow's Story
“All we want this Christmas is to be back together as a family.”
Baby Harlow, now 33 weeks old, has been in hospital since birth. She has never been home. Mum Claire has been by her bedside every day. Her two-year-old brother and Dad are 180 miles away, in Lossiemouth near Aberdeen.
Claire says: “When Harlow was born, she could only move her right hand, couldn’t swallow and her airway was obstructed. We all underwent genetic testing, and she was diagnosed with congenital myasthenia – a rare genetic disorder.
“After seven weeks, there were talks of us getting home – then Harlow had a respiratory arrest. One minute she was fine, the next her heart rate was fluctuating, she turned blue, and stopped breathing.
“Lots of doctors and nurses came rushing in and thankfully managed to bring her back. Aberdeen hospital doesn’t have an ICU, so the next thing we knew, she was intubated and we were in a helicopter to Edinburgh. This was 12th June. We’ve been here ever since.
We’re not even thinking about being at home for Christmas. All we want is to be back in Aberdeen, so we can be together as a family - even in hospital.
- Claire
“Every day is a rollercoaster. She’s had good days, and really bad days. You appreciate the good days, but never fully. You’re always on edge, always waiting for the next bad day to come.
“Every time she cries, she could potentially shut off her airway. It’s not a question of ‘is she hungry? Does she need changed?’ It’s ‘is her trachea blocked? Is she going to stop breathing again?’
“The NHS staff have been absolutely amazing. I don’t think I’d have coped as well as I have if I hadn’t had their support all the way. I always feel that Harlow is in safe hands. I really can’t praise them enough. I’m also so grateful to have a room in Ronald McDonald House so I’m by Harlow’s side, and for all the support we’ve had from Kindred too.
“The hardest part has been being away from Bailey, Harlow’s big brother, and her dad. As they’re so far away, they can only come every second weekend to visit. Everyone is wonderful here and keeps me smiling, but it can get very lonely. Sometimes it feels like we’ll never get home.
“The days are very limited and repetitive. We can’t just go for a walk in the park. She can’t play with her brother. The visits from ECHC have been a huge support. Harlow absolutely loves anyone interacting with her. She especially enjoys baby sensory and seeing Rhys with his guitar.
“We’re not even thinking about being at home for Christmas. We know that’s not realistic. I walked past the hospital Christmas tree the other day and it hit me how different our day will be. But all we want is to be back in Aberdeen, so we can be together as a family, even in hospital.
“We don’t know what Harlow’s future will be. We’re taking each day as it comes. I always remind myself she’s still here, she’s still fighting. I’ve still got my daughter and there’s hope for her.”
