At 27 weeks, during a routine pregnancy ultrasound, Guillette’s unborn baby, Finlay, presented with 2:1 heart block. Guillette was transferred from the general hospital to an academic hospital where the sonographer suspected Long QT Syndrome. Unfortunately, this was dismissed by doctors as it was ‘too rare’ to be a possibility.
As a precaution, Guillette was induced at 38 weeks at a specialist hospital in Nijmegen and for a short time all seemed well. However, Finlay’s rhythm soon descended into chaos and the lead cardiologist looking after Finlay had gone on vacation.
Finlay spent 2 weeks in ICU on Propranolol with a sleeping heart rate of 43. A few weeks later the DNA test results revealed Finlay had Long QT Type 3. Finlay was then transferred to Leiden University Medical Centre on the other side of the Netherlands from their home for more specialist care
Doctors told Guillette not to google Long QT Syndrome… and of course Guillette immediately googled Long QT Syndrome! The doctors were at a loss of how to best treat Finlay so Guillette began searching for parents with children with the same condition to look for advice.
It was online that Guillette found David Hutton and his blog about his daughter Isla – The Long Cutie – who also had Long QT Type 3. After speaking with David, the team in the Netherlands reviewed Isla’s treatment plan and a plan was put in place for Finlay to have a pacemaker and be started on a high dose of Mexiletine. In Finlay’s first year of life he spent 8 months in and out of hospital while they gained control of his arrhythmias.
Finlay now has an ICD implanted and has certainly had a rough time with Long QT 3 but despite it all he is a very happy and sweet little boy. As a parent of a child with such an aggressive presentation, Guillette struggles with anxiety and what may be around the corner.
“The fear of what is to come in terms of operations and uncertainties, and the fear of losing your child, marks my life. I don’t talk much about it, and you can share it with your loved ones, but the loneliness sometimes overwhelms. I have a very positive outlook on life, but sometimes it is difficult to form relationships.”
Guillette is a fantastic artist and loves to paint, but what she loves most is spending time with her children. Finlay is her inspiration as although he has had more trauma than most adults, he has a wonderful zest for life, and that is what Guillette tries to harness daily. Helping her children realise as many of their wishes as she can is what she loves most.
As a message for other Long QT parents, Guillette wanted to share:
“The Long QT community can be very powerful and very knowledgeable. Other parents are hands-on experts and understand what you are going through. Trust your instincts when it comes to making the important decisions.”
“I wish for all parents – faith and love. The children in heaven, like Isla, show the essence and simplicity of real love. Cherish them.”
Guillette has real hope for the future and the work being done by Thryv Therapeutics who are developing an SGK1 inhibitor, the first drug ever created specifically for Long QT Syndrome.