The wait continues…

Since our last update, we’ve been waiting to hear about the date for Jessica’s next surgery. We have now had a call but the proposed date (15th September) coincides with the start of one of Michael’s busiest periods work-wise. This was something that we mentioned to the surgeon at Jessica’s appointment back at the start of the month, and we were reassured that although the surgery was needed, it was not urgent. We are hoping therefore that we can hold off for a few more weeks so that Michael can focus on being there for Jessica without trying to juggle too many balls on the work front too.

We are now waiting to hear again from Southampton with regards to a different date for the surgery. In the meantime we have been focusing on enjoying family moments over the summer. It has been lovely to be able to enjoy the whole of the summer holidays. We’ve had weekends away, spent time with family and enjoyed lots of days out. Living in limbo has been hard at times but it has also meant we’ve focused on enjoying the moment as much as possible.

Jessica had her routine check-up with the paediatrician at Wexham Park yesterday. She has managed to gain some weight since her last check with the community nurse and is now up to 16.7kg which is encouraging.


Earlier this month, Jessica’s story was featured in the Daily Mirror, helping to raise awareness of congenital heart defects and the work of Tiny Tickers in helping to improve early detection. It is amazing to think that next week she will celebrate her 6th birthday and start Year 1.

Discussing the next surgery

Today has mostly been spent in Southampton, where Jessica has spent time on Ocean Ward, looking around and having an echo done. She remembered the ward from her stay last year for her cardiac catheter procedure and is very excited at the prospect of having a “sleepover” at the doctors.

We’ve spent time over the last couple of weeks preparing Jessica for going to hospital for surgery. Louise has written and illustrated a book to help show Jessica what will happen on this next step. We’re waiting for a printed copy to arrive but Jessica loves reading the ebook version. To her, this big step on her journey is an adventure.

We didn’t get to meet Mr Viola, who will be Jessica’s surgeon, today as he was carrying out emergency surgery. We did meet one of his surgical colleagues to discuss Jessica’s next operation. The Fontan procedure completes the separation of deoxygenated blood returning to the lungs and the oxygenated blood which needs to be pumped by the heart to the body. Normally, the heart pumps the deoxygenated blood to the lungs before it then returns to the heart to be pumped around the body. With a Fontan circulation, the blood goes directly to the lungs without having to be pumped through the heart first.

The Fontan procedure connects the inferior vena cava (the vein carrying the blood back to the heart from the lower half of the body) to the pulmonary artery which goes to the lungs. This can be done in a couple of ways – either by creating a conduit outside the heart (external Fontan) or by creating a wall within the heart (internal Fontan). The external Fontan is the technique usually performed by surgeons at Southampton and this is what they will aim to do with Jessica.

For the Fontan circulation to work, the blood pressure in the lungs needs to be lower than that in the body and the blood flow needs to be unrestricted. Jessica’s cardiac catheter procedure last year indicated that her pressures are suitable for the Fontan. She does however have a small left pulmonary artery. It may be possible to enlarge this during surgery if needed.

All being well, this should be Jessica’s last planned surgery. As this procedure has only been around for a couple of decades, long-term prognosis is still a little unknown. We were told that 10 year survival rates post-Fontan are around 93% and 20 year survival rates are around 80-90%.

We are now waiting to hear from the surgical co-ordinator who will contact us with a date for the surgery. At the moment, we don’t have a time-frame for when this is likely to take place – it could be in the next month or it could be in a couple of months’ time. We will update again when we know more.