Beautiful Astrid was “simply perfect” when she joined her mum, dad and two sisters who’d been excitedly awaiting her arrival. As the family waited to be discharged with their baby girl the following day, a midwife made a devastating discovery. Mum Amelia shares the heart-wrenching journey that led to Bluebell Wood becoming Astrid’s forever home. 

“Astrid came flying into the world full-term and seemed absolutely, perfectly fine for the first 16 – 17  hours of her life,” said Amelia.

“She was alert, feeding well and generally really lovely. I had a whole night in hospital with her, blissfully unaware of what was to come.”

Alarm bells started ringing while the family waited to be discharged, as the routine checks took longer than expected. It was discovered that Astrid had a heart murmur, which can be quite common in newborn babies.

“You could sort of tell from their facial expressions that it was a significant murmur, not a little one.

“I’d gone from being in a state of pure joy to thinking, ‘what on earth is going on?’. I was trying to stay calm because I still thought she’d be alright  - but it did feel like I was having some sort of weird out of body experience.”

Later that day, Astrid was transferred to the specialist heart unit at Leeds Children’s Hospital. On Friday, two days after she was born, it was confirmed that Astrid had a complex heart defect known as Hypoplastic Left Heart Syndrome which meant she only had half a functioning heart.

The family were given two options and faced with an impossible decision. They could let nature run its course by opting for what’s known as comfort care, or opt for risky palliative surgery which offered a chance to prolong her life.

“If we thought it was going to fix her, we’d have opted for the surgery without question.

"She probably had a 50/50 chance of surviving it and if she did, there would be more surgery to come. But it didn’t seem like putting her through it would buy her any quality of life.

“It was just a horrific choice to make, and I’ll always question whether we did the right thing. But I think deep down I know we did.”

It was suggested the family, who expected to have two or three days at the most with Astrid, move to the more homely surroundings of Bluebell Wood.

“Taking her home didn’t seem right; we needed that extra help and support. This may sound strange as Astrid is very much a part of our family, but we needed our home to remain a safe space for our other  girls.

“It sounds like a funny thing to say but Bluebell Wood will always be Astrid’s home. We have such beautiful memories and the care team were amazing with all of us.”

Astrid’s extended family came to meet her over the next few days, acutely aware the clock was ticking. But she continued to defy the odds.

“Every day with Astrid was a gift, but because we had the other girls our lives were torn in so many different directions. We doubted everything. How could she possibly have half a heart when she was living for days and days?

A couple of days later, the family moved to a bigger family suite where they stayed for the remainder of Astrid’s 21 days at Bluebell Wood.

“It felt more like a home from home and we got into a bit of a routine. The girls would come over after school and see us for a few hours each day.

“For such a traumatic experience, they have nothing but beautiful, positive things to say about Bluebell Wood, which is testament to the type of place it is.

"You are quite literally going through hell, the worst thing that anyone can experience, and yet you’re so comfortable and so well looked after.

“Without Bluebell Wood it would have been so different. We wouldn’t have had that support and we wouldn’t have been able to make all those positive memories – not just for us but for the girls and our families too.

"We could rally ourselves for a few hours to see the girls so they weren’t seeing us absolutely broken.

"We were always very honest with them, but I hope we protected them from the worst horror of it all.

“People have asked me how I can face going back to the hospice for counselling. I tell them it’s the place where I feel most connected to Astrid – it’s her home.”

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