Jessica's Story
Jessica was diagnosed with two major heart conditions when she was 3 weeks old on 10th December 2014. Hypertrophic Cardiomyopathy & Pulmonary stenosis.
Jessica unfortunately became very ill as the weeks went by. Jessica spent the next 7 months in the Intensive Care Unit, being kept alive by a life support machine. Her only option for survival was a heart transplant. Jessica faced many battles while waiting on her precious gift of life. It was a race against time, it was minute by minute as she battled through multi-organ failure. Keeping her poorly heart beating was a mammoth task, however, the ICU team’s dedication portrayed to Jessica was magnificent. The days were very long and very hard. In the meantime, genetic testing was carried out on Jessica. Jessica’s results came back that she has Noonan Syndrome which is a genetic disorder. This explained her congenital heart defects and the need for a lifesaving heart transplant.
In the early hours of one morning, Jessica’s Mam Elaine received a phone call. “We got the most important phone call of our lives; we have a possible donor heart match for Jessica. As I raced over to ICU, in my pyjamas, they had Jessica prepped for the journey ahead. We all got Jessica to the UK safely via the Irish Air Corps and alongside her was her ICU medical team who have been by her side every step of the way.
Jessica received a precious donor heart and has had the most wonderful 10 years. However, she has faced many of health battles since.
Children’s Health Ireland (CHI) at Crumlin has been our home from home, our support network and most importantly our lifeline for Jessica when she becomes unwell.
Many infections and illnesses have crept in over the years. The staff at CHI at Crumlin got her through each episode and back home to us where she belongs.
Jessica then developed PTLD (Post-transplant lymphoproliferative disease) a type of cell lymphoma in November 2021. We entered a new journey faced with a rigorous chemotherapy plan.
The oncology & haematology teams were outstanding. As always, the teams came together and did their upmost best and provided Jessica with outstanding care. Everything has been extremely hard, it impacts our family immensely, however Jessica remains strong with us all by her side.
Last year in February 2024 Jessica survived a sepsis episode. The early detection and early treatment provided by the emergency department and cardiac team at CHI had been life saving for Jessica.
In 2024, Jessica also had her yearly routine cardiac angiogram. We unfortunately did not get good news. Jessica is now in the process of cardiac allograft vasculopathy (CAV). This is where her arteries are now starting to become abnormally narrow. This can be one of the many complications that can set in post-transplant. Together her cardiac team in CHI at Crumlin, liaised with her cardiac team in Great Ormond Street Hospital London. They introduced a new treatment plan for Jessica. She started on a second anti-rejection medication to try to slow the process of artery disease.
We embrace every great day with Jessica. Having her at home, keeping her well as can be, keeping her infection free and for her to attend school on those great days is a blessing. It is Jessica’s best quality of life. It’s what organ donation is all about – quality of life. Nothing can beat that.
A special thank you to our CNS Helene Murchan, CNS Marie, Dr. Franklin, Dr. Mc Mahon & all the cardiac consultants, to all the nursing staff, intensive care unit staff, to the health care assistants especially Janet on the heart centre, play specialists, the cleaning staff, social worker Jenny and Catherine the psychologist. You all go above & beyond for Jessica, we would be lost without you all.
Children’s Health Ireland at Crumlin – you are our lifeline in keeping Jessica alive and enabling her to have a quality of life.”
