Starting School: Jessica's New Adventure

Jessica’s parents were aware of her AVSD (Atrioventricular septal defect) diagnosis before she was born. However, due to further complications and conditions, the family have spent much of Jessica’s life in and out of hospital, needing constant, specialised care for their wee girl.

Hear Jessica’s story in the words of her Mum, Lyn.

Jessica’s Hospital Journey

“Jessica was born in May 2018 at 37 weeks and spent 10 days in NICU. We got the diagnosis of Downs Syndrome when she was a day old. She got home at 10 days old, fully off oxygen and was feeding normally.

When she was 8 weeks old, she got her first immunisations, and we had to take her into hospital for a checkup as we couldn’t get her temperature down despite giving her Calpol. They felt it was best she was checked in hospital due to her heart condition. On checking her in hospital she was rushed to resus as she had oxygen saturations of 80% and she was very pale. Turns out she was in heart failure and had to have emergency open heart surgery on August 9th.

She was in hospital for 4 months after that as she had a few complications. It was during this admission we found out she had Achondroplasia, as doctors were concerned that she had short arms and legs and did further tests.

The combination of both Downs Syndrome and Achondroplasia is extremely rare with only 7 recorded cases. It was also during this admission we found out she had pulmonary hypertension, and they were struggling to get her off the oxygen. She went home on oxygen in the October. She ended up back in hospital in January 2019 due to low oxygen levels and struggling to breathe. This was the start of her spending the next 18 months in hospital with respiratory issues.”

“She has had 30 admissions to PICU in her short life and been ventilated a lot as well. She is a happy cheeky wee girl and doesn’t let anything get in her way!”

Lyn, Jessica’s Mum

How Your Donations Make a Difference

Throughout these stays where Jessica has needed to be ventilated, the charity-funded MoVE project has allowed her parents to be near their daughter and help her mobility,

“We loved the MoVE project as it let us get cuddles with Jessica even though she was on a ventilator, and I think the fact we were able to move her about really helped in her recovery as she wasn’t stuck in a bed for weeks at a time.”

Lyn, Jessica’s Mum

MoVE stands for ‘Move on Ventilation Early’ and helps children to recover more quickly by getting them moving as soon as possible following their admission.

Thanks to funding from Glasgow Children's Hospital Charity, the MoVE project has led to children in intensive care having the chance to be cuddled, play, and exercise from their beds, or even be taken for a walk round the hospital grounds. This is a dramatic change for young patients in Intensive Care who in the past would have spent entire days confined to their beds.

Jessica Starts School

Thankfully, Jessica has not had a hospital admission since December, and is doing really well back at home with her Mummy and Daddy, learning more words and to walk with the aid of her walker.

Now, Jessica has a new exciting journey ahead, starting primary school! Her mum Lyn has said,

“We are so excited for Jessica to start school, she is so ready for it, and we think she will do amazing! We are so proud we never thought we would see this day happening.”