Jessica was diagnosed with Ventricular Septal Defect (VSD) at 7 months old after her GP detected a heart murmur.
After numerous appointments and discussions with specialists, the decision was made that Jessica would need open heart surgery to correct the hole in her heart. Her surgery was done when Jessica was 2.
The team were happy with the closure and, although there was some fluid accumulation, this was dealt with quickly and Jess was discharged after 6 nights in hospital.
Jessica’s mum Jo describes the process from diagnosis to intervention and the impact it has had on the family as a whole:
Although Jessica’s heart condition is fairly simple compared to others, this has still had a massive impact on the whole family.
The shock and concern at diagnosis, the never ending worries and questions and the decision making process have been incredibly challenging. Doing this and continuing daily life as a family, has been a constant challenge.
We have felt like we are living our lives waiting, from one appointment to the next, from one decision to the next, from one phone call or letter to the next.
Waiting for the letter or call to give us a date was one of the hardest things, knowing we were on the cancellation list so everything could suddenly change if we got a call, putting everyone and everything else on hold because we just didn’t know what was happening.
Jo explains how she hospital staff made sure everyone in the family were looked after during Jessica’s time in hospital, particularly her son Harry, who found it difficult to understand what was happening to Jess and was understandably worried about her.
Harry has had support from the play specialists to understand this better and Charlotte (one of the nurses on ward 51) made him feel much more comfortable simply by explaining what she was doing when she did Jess’s observations, and by involving him in this.
In addition, Jo describes the care she received from one of the clinical physiologists funded by Children’s Heart Surgery Fund:
We couldn’t have got through this without her. Thank you so much if the CHSF provide funding to her role.
She rang every few weeks while we were on the waiting list for surgery. We had a face to face session with her to talk things through. We chatted to her once we had taken Jess to anaesthetic, she came to see us on ward and in PICU.
Her friendly, likeable manner has given myself and my husband the support we so desperately needed. She appeared when we needed her, as if she knew we did!
The family have organised and taken part in lots of different events to raise money for Children’s Heart Surgery Fund. These have included; the Superhero Walk, Wear Red Day and fundraising parties to name a few.
Before surgery I thought CHSF funded a lot of the things that the NHS couldn’t afford but that some may see as non-essential. I have changed that view following Jessica’s surgery.
The CHSF fund essential services and equipment without which the patient experience would be much less positive.
We are trying to think of fundraising to do in the future as we are so grateful and want to support the charity. You will be our charity for life. We will raise as much for you as we can.