Four months on

It is four months today since Jessica died. Four months since our world was completely shattered by her sudden passing. Life has been such a rollercoaster over these past few months and especially so in the last couple of weeks with the arrival of baby Thomas. Thomas’s arrival has brought us so much joy but many moments of sadness too that Jessica never got to meet him. She would have been so thrilled to be a big sister again, especially as she was hoping for a baby brother.

We finally got the post-mortem results on the day Louise went into labour with Thomas. The cause of Jessica’s death was stated to be a congenital heart defect, with secondary factors being viral infections and liver changes (which would have been due to her Fontan circulation). None of these really explain why she passed away quite so suddenly though. We can rule out some of the things that we had wondered about, such as a blood clot or aneurysm. One of the possible explanations that we’re left with is that Jessica’s sudden cardiac arrest may have been caused by an arrhythmia. This is something that wouldn’t have been picked up on the post-mortem as it could only be detected while her heart was still beating.



Before we received the post-mortem results, we had a meeting with the A&E consultant who looked after Jessica on the night she died. We wanted to understand a little more about what happened the night she died – particularly as it looked like Jessica still had a heart beat when the paramedics arrived but that she didn’t have a shockable rhythm. We were told that although the monitor did pick up residual electrical activity, Jessica had no pulse when she arrived on A&E. Her heart had already stopped pumping at that point.



We received the results of the genetic tests a few days before the post-mortem results. These tests showed that Michael carries the same deletion that Jessica had and therefore this deletion had no significance with regards to either her heart condition or her death.



Now that we have the post-mortem results, we have been able to register Jessica’s death, which we did a few days after registering Thomas’s birth. We took Thomas to GreenAcres to visit his big sister for his first trip out. As you can imagine, it was a very emotional visit.

Sophie is enjoying being a big sister to Thomas. She is very loving with him and tells us that she loves her baby brother and is proud of him. She had a good role model when it came to how to be a big sister and it certainly seems like she is following in Jessica’s footsteps in that regard. We are sure that Jessica would have also been an amazing big sister to Thomas too. It makes us so sad that we will never get to see it though.

We are hoping to meet with the team in Southampton at some point to discuss the post-mortem results and go through some of the questions we still have. We know that we are unlikely to get any more answers but I think it would still be helpful for us to have that discussion.