Mara’s Story

Nicky Henderson was first supported by The Archie Foundation in 2019, when her daughter Mara, was born at just 33 weeks. Diagnosed with 3 holes in her heart at just 3 weeks old, Mara spent the first 4 weeks of her life in the Neonatal Unit in Aberdeen. “Nothing can quite prepare you to leave the hospital without your baby, but we were able to receive photos and videos of her through VCreate which helped while we were apart.” The Archie Foundation provide milestone cards for those little moments. These cards range from “my first picture” to “my first feed”. Nicky said that these pictures really helped Mara’s big brother and sister, Callum and Isla. They enjoyed seeing her photos and the milestones she was reaching.

Just after 4 weeks, Nicky and her family welcomed Mara home but unfortunately, it wouldn’t be for very long. Mara was admitted to Royal Aberdeen Children’s Hospital (RACH) just 4 weeks after arriving home, after she kept turning purple and struggling to breathe. “She was an enigma, no one knew what was going on”. Nicky explained that they were frequently in and out, staying for 2 weeks at a time, going home for 3 days at most before being admitted for another 2 weeks. When Callum and Isla came to visit, Nicky said the toys and crafts provided by The Archie Foundation’s play therapist “made the hospital not so scary for them which took pressure off us to make sure they were ok when life was stressful”.

Whilst Mara was in the ward, one of her parents was able to sleep in a bed next to her. However, when her health deteriorated, and she was moved to the high dependency unit (HDU) they were no longer able to sleep in a bed next to her. They stayed in the Family Centre, where they had a private room with ensuite and access to the lounge where they could make their own meals.

As Covid and lock down came into place in 2020, Mara was sent home with oxygen. But soon after, Nicky took her in under the advice of their Cardiac Liaison nurse, where she collapsed and was rushed to A&E. At just 5 months old, Mara was airlifted to Edinburgh paediatric intensive care unit (PICU) where she was diagnosed with severe tracheomalacia, bronchomalacia and narrowed airways. Unfortunately, whilst in Edinburgh PICU, Mara contracted a lot of infections and was put under palliative care. Nicky’s husband was called down as things weren’t looking good. “She had septicaemia, ecoli, mrsa, suspected NEC all at the same time and as she recovered from those, she got spontaneous bilateral chylothoraces which could only be put down to heart failure”.

Eventually, when Mara was strong enough, she was moved to Glasgow where she underwent open heart surgery. It was a risky procedure which the surgeons, having never seen the combination of ailments before, were unsure would work. There was a risk that the surgery would be too much for her or make her condition worse.

Being the fighter that she is, however, Mara recovered well and was transferred back to Edinburgh. After 5 months in intensive care, she finally came home to Stonehaven and incredibly, was discharged from palliative care. “I was told (that) has so rarely ever happened” explains Nicky. Sadly, this wasn’t going to be the end of their difficulties though. Only 4 days after returning home, little Mara caught another infection and was admitted to HDU in the Royal Aberdeen Children’s Hospital. “She was the first child in Scotland to have an image of her heart digitally sent across Scotland and she also has a passport for PAU!”.

Fast forward to now, and Mara is a healthy and happy 4-year-old. “Medically we were told she shouldn’t be here, but she is tenacious and has a fiercely strong personality”. She now only comes in for routine appointments and of course to say hello to her many friends (including Archie the rocking horse). “Despite all that she’s been through, the hospital isn’t a scary place and that is thanks to the kindness and support of the many teams who have helped Mara and The Archie Foundation.”

Mum Nicky wanted to share Mara’s story for other families who may need a bit of hope. “Hopefully it’s a reassuring and positive story. We are so proud of Mara and still can’t quite believe how lucky we are”.