Chris and Connie
Heart Valve Voice Chair Chris Young Shares His Family's Heart Valve Disease Story
Monday 17th July 2017
As a consultant at Guy’s & St Thomas’s Hospital in London heart valve voice chairman, Chris Young treats heart valve patients every day as part of his job. However, when recently faced with having to see his two year old granddaughter, Connie, go through her own heart valve surgery he has seen the disease and what patients go through in a different light.
In my work as a consultant, I am usually the person in charge of making decisions about what treatments my patients will receive. However, when heart valve disease struck my family a few months ago, that sense of control was lost. I was no longer the consultant, I was simply Gramps and I wasn’t in the position to make the decisions or initiate anything.
The situation with Connie was quite different from what is common of heart valve disease as it is most commonly found in older adults. Connie was originally diagnosed with meningitis in February of this year and she had contracted the horrid bug pneumococcus which infected and destroyed part of her mitral valve. This resulted in Connie developing heart valve disease and requiring a valve repair as she was too young for a replacement.
It was a difficult time for the whole family, young Connie had an adult disease, yet she was only a toddler. The medical team were brilliant. They carefully planned out Connie’s surgery during the Multidisciplinary Team (MDT) process that included a range of clinicians all contributing their expertise and advice. This gave me the utmost confidence in the team and I knew that whatever happened, Connie would have the best treatment team possible.
In the end, the surgery was perfect. Connie was also the perfect patient and being so young helped her take it all in stride. She didn’t complain or moan and despite the scary circumstances she managed to stay her sweet, happy self. After the surgery, she bounced back quickly and was able to go home after only four days. Three weeks on she is as good as new and mum, dad and Gramps are back to chasing around our energetic two year old.
When I first became involved with Heart Valve Voice, it was as a clinician with the focus of helping make a difference and improve patient care. After Connie’s surgery I have now gained a new perspective. Going from admission, to diagnosis, to the operation from the perspective of a family member gave me the opportunity to watch as the drama and consequences unfolded from a personal view. It was difficult to be in the position of the family, scared and powerless, and not following my instinct to tell everyone what they needed to be doing.
My experience with my granddaughter has made it all the more clear how important Heart Valve Voice’s role is in helping patients and families to understand what they are about to experience. It is so important for the charity to make those individual contacts, not only to connect patients with their stories and with each other, but to also make contacts with Parliament to encourage changes where they matter most. This included changes to the diagnosis and treatment pathway so that patients are treated sooner and more efficiently.
Heart Valve Voice needs to be there for people. It's as much about individual contacts and stories as trying to change Parliament. That’s what this episode has taught me.