Investigation report and JoGLEing for Jessica

We have now received the report from St Peter’s Chertsey after their investigation into the care that Jessica received there shortly before her death. They have concluded that Jessica’s care there was appropriate and acceptable and the cardiology team at Southampton were happy with the care that Jessica received and the decisions that were made. The only thing that might have been done differently would have been to transfer her back to Wexham Park instead of discharging her home as she was known to the medical staff there but they feel that this was unlikely to have made a difference to the outcome. The one area that was identified as needing improvement though was with regards to communication between the trusts involved in Jessica’s care as St Peters should have been informed of Jessica’s death at the time and not six months later.



The report did give us one new piece of information – that Jessica’s death was from viral pneumonia and was unlikely to have been caused by an arrhythmia. It doesn’t really explain why she collapsed so suddenly or the mysterious back pain that she complained of in those last few moments but we are resigned to the fact that we know all we are ever going to know and that the only explanation we have is simply that her heart could no longer cope with the viruses she had. It seems surreal that this is the last new piece of information we will have about Jessica.

Sixteen months on, how are we doing? In many ways this second year of loss has felt harder than the first. We miss Jessica so very much and the ache for one more moment feels unbearable at times. But we keep going as best we can. Sophie has enjoyed her first year of school and Thomas is now a year old and increasingly on the move - cruising around the furniture and full of smiles. He is very much like Jessica in temperament.

Since our last update, Jessica’s memorial has been put in place at her forever bed. We are so thankful to Lillyfee Woodcarving Studio and the skill of their team at recreating Jessica with her Kerry doll. They captured her so beautifully and the level of detail is incredible. I can recognise exactly what outfit she is wearing and the way she is sitting and has her little plaits one forward, one back is so characteristic of her.

Jessica's school have also put up a memorial for her. We were invited to school along with some of Jessica's classmates to open her memorial and to write a memory of Jessica on a ribbon. These ribbons were then tied to a beautiful butterfly which is fixed to a wall in the school playground. There is an outdoor arts space dedicated to Jessica, which is very appropriate given her love of drawing, and her photo hangs in the school corridor. The mosaic butterflies which surround it were put together by her classmates and Sophie.

Later this month, we will be travelling from John O’Groats to Land’s End by train and bus – our “JoGLE for Jessica” to raise money for Little Hearts Matter in memory of our beautiful big girl. We did this journey the other way round three years ago with our girls and it was quite an adventure. No doubt it will be very bittersweet to do it again and it will certainly be challenging with a 12-month old in tow but hopefully we will have fun too!

If you would like to support us and help us raise money for a fabulous charity that is very close to our hearts, you can do so via our JustGiving page.



We’ll update again to let you know how we get on!

Six months on

It has been six months since Jessica died. Coming up to the six-month milestone has been a very emotional time for us all. We have had some of our hardest days since Jessica’s funeral. This year’s Little Hearts Matter autumn memorial walk took place on 13th October. It felt like an appropriate way to spend the half-anniversary of Jessica’s last day. Sophie enjoyed decorating paper hearts to hang on the LHM tree and planting bulbs around the bench. It was also lovely to hear how popular Jessica’s heart operation books have been and to know that her story is still helping others.

This morning, we received a letter from St Peter's hospital informing us that they are carrying out an investigation into the care Jessica received shortly before her death. This process is expected to take about four months. One of the many questions that we have asked ourselves since Jessica died is whether she would still be here had she not been discharged that day. Perhaps this is a question which may now be answered. The findings from the investigation won't bring Jessica back of course, but perhaps there are improvements in care which could be made as a result.


We have also spoken again to the team at Southampton and are hoping to meet again with them to discuss the findings of Jessica’s post-mortem. The information we received was very limited and we are hoping they can obtain a few more details.


Louise has continued to blog about life after Jessica and our grief journey over on her blog and has found this helpful. Last week, her blog won a Brilliance in Blogging award in the Inspire category.


This weekend Louise's brothers and nephews are running the Great South Run in memory of Jessica and fundraising for Little Hearts Matter. We will be going along to cheer them on. If you would like to support them, you can find their JustGiving page here.

Jessica's 7th birthday

Today is Jessica’s 7th birthday and the 7th anniversary of her first open heart surgery. The first of our big girl’s birthdays without her. It has been a very emotional day, especially as it was also Sophie’s first day at school. Jessica would have been so proud that her little sister was going to school with her and so excited about it also being her birthday.


Nanny and Auntie Loraynne came up for the day and we had a little birthday celebration for her at her forever bed at GreenAcres. I made her a “Kerry birthday cake” modelled on her favourite toy and Sophie blew out the candle as we sang Happy Birthday to Jessica. I am sure Jessica would have loved her cake. She adored her Kerry and she absolutely loved cake. "Cake" was one of the first words she learned to sign as a baby, along with more and please!

This first birthday has been a hard one. We miss our little girl so much and even more so on days like today. Thank you so much to everyone who has wished our beautiful girl a happy birthday today and those who have been keeping us in their thoughts and prayers.

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.

Learning a little about Jessica’s genetics

We had a phone call from Southampton a couple of weeks ago. They had been in contact with Dr Fowler, the pathologist, with regards to some genetic analysis that had been done on Jessica. This showed that Jessica had a small area missing from one of her chromosomes.


Humans normally have 23 pairs of chromosomes in each of their cells. These pairs are numbered 1-22 in order of size, with the two sex chromosomes (XX for females and XY for males) making up the 23rd pair. One half of each pair is inherited from your mother and the other half is inherited from your father. The small area that Jessica was missing was on the short arm of one of the chromosomes in pair 11 and is called a 11p15.4 deletion.

Whilst it was unlikely that this deletion had any impact on what caused Jessica’s death, Michael and I were referred to the geneticist at Oxford for a blood test to see if either of us carry this mutation. As we hadn’t received an appointment for this when I went for my antenatal appointment last week, it was chased up by the obstetrician. It turns out that there is actually quite a long wait normally to see the geneticist but me being pregnant has helped significantly speed things up in this regard! This morning, we had an appointment at the John Radcliffe for the genetic test.



The geneticist doesn’t think that this very small deletion is significant either with regards to Jessica’s heart condition or her death. There is a rare neurological condition associated with the deletion but this only occurs in adulthood and the deletion would need to be on both chromosomes in the pair. Jessica would therefore have been a carrier for this condition. It is likely that she inherited this from one of us but it is highly unlikely that we both would carry this deletion. In terms of the post-mortem results, she feels that it is, in her words “a red herring”.



Our impression is that this test is being carried out just as part of gathering as much information as possible from Jessica’s tissue samples. We had our blood tests done this morning and it will take about six weeks before the results come back from these. This also means that we are unlikely to receive any results from Jessica’s post-mortem before this time as well. We don’t yet know if there have been any other results from the post-mortem which may shed any light as to what caused Jessica’s sudden death. We will update again when we know more.

Jessica's final journey

Yesterday’s celebration of Jessica’s life was everything that we wanted it to be for her. A beautiful sunshine day, surrounded by family, friends and love, sharing memories of a little girl who touched so many people’s hearts. It was a day of both sadness and smiles, laughter and tears and was a fitting tribute to our little miracle.

Photo taken by Charlie Pugh

We were able to spend some time with Jessica in the last couple of days before her funeral. Being able to sit with her, to hold her hand, look at her beautiful little face and give her kisses, to read some of her favourite stories to her and to tuck her in one last time with her Kerry snuggled next to her was such precious time.


Jessica arrived at our home for the last time at 12.30pm. The three of us, along with Jessica’s grandparents followed her to the church for the celebration of her life. The service was led by our minister Nick. Nick’s first service at our church was two days before Jessica was born. We are glad that he was able to lead her last service at church, having known her throughout her short life.

It was a beautiful service. Jessica’s godparents Bryan and Nicki shared our chosen Bible readings. Michael and I shared our memories of our little girl with her special heart, reflecting on how she taught us to live life to the full and enjoy every moment. We have so many happy memories to look back on and we are thankful for them all. Jessica’s godmother Katy shared a poem she had written as a tribute to Jessica. Jessica’s reception teacher, Miss James, shared some memories of Jessica at school and Stephanie, the Girls’ Brigade Captain, shared her memories of Jessica at Girls’ Brigade. These were followed by a video showing photos of Jessica throughout her life, interspersed with a couple of video clips of her, and finishing with one where she takes a final bow. The way she used to bow after doing a dance, or a show always used to make us smile. It felt like the right way to end the video sharing memories of her life.

Photo taken by Charlie Pugh

After the service, Jessica’s pink heart-covered casket was carried to the meeting area in the church to allow people to say their last goodbyes to her. The church was absolutely packed. A huge thank you to Michael’s colleagues for setting up screens and a sound relay into the meeting area and side room to ensure that those attending were still very much part of the service even though we couldn’t fit everyone into the chapel, Tracey who organised the refreshments and beautiful cake display and the church staff and stewards who helped make everything run smoothly. We only had a short time at the church before we had to leave for GreenAcres and we didn’t manage to speak to everyone who attended. Thank you so much to everyone who came – we certainly felt surrounded by your love and support even if we weren’t able to speak to you in person.

Photo taken by Charlie Pugh

We were honoured to have a police and TFL escort holding the traffic to help the first part of Jessica’s journey from church to her final resting place at GreenAcres.

The service at GreenAcres was a much more intimate one with Jessica surrounded by the closest members of our family, her godparents and a couple of our close friends who had been a significant part of her journey. Nick led the beautiful brief service at the graveside, with godmummy Gillian sharing a poem before Jessica was laid to rest in her forever bed. We each threw in a pretty flower for her and Sophie pressed the button to start the bubble machine. She and Jessica always loved trying to catch bubbles in the garden together. As Sophie gave Jessica her flower and tossed in a little handful of earth, she waved and said “bye, bye Jessica.” Throughout the service at church, and the one at GreenAcres, she was a little superstar.

Photo taken by Charlie Pugh

Photo taken by Charlie Pugh

We were welcomed by our family and friends shortly afterwards at Chalfont St Peter Community Centre where we shared memories of Jessica over sandwiches, cakes and cups of tea. It was lovely to be able to spend time with family and friends and remember our little girl.


We have been so touched by all the little things that have been done so far in Jessica’s memory, and those that are planned. Sophie’s preschool has created a garden area for the children with pretty flowers, a bench, butterflies and dragonflies and called it “Jessica’s garden”. Jessica’s school held a day for her – “Jessica’s day” – the day before her funeral where the children came dressed as princes and princesses and had a balloon release in her memory. It made us smile to see one of the male teachers dressed in a princess dress for Jessica. He will be Sophie’s teacher next year when she starts in the same reception class that her sister was in.

Thank you to everyone who came to Jessica’s celebration, who have shared messages of love and support on our social media, or who have simply been holding us in prayer over these last few weeks. Thank you also to those who were involved with the arrangements yesterday and helped make that final journey an easier one. Yesterday was a tough day, but we felt so surrounded by love throughout. You all did Jessica proud and made her send-off a truly beautiful and special one. This morning has been harder still – having to start facing the reality of life without Jessica without having the focus of her funeral to distract us.


I had originally intended for this to be the final post in Jessica’s blog as her last journey. However, her story is still a little unfinished. We are still waiting for the final results of the post-mortem and so her cause of death remains unknown. It may be that the results are inconclusive but we will update this blog when we are able to share this piece of information about Jessica’s journey and if there are any future stories to share about the things that are being done in Jessica’s memory. The stories of our life as a family and our own journey through our grief will still continue over on Louise’s blog at https://littleheartsbiglove.co.uk

Jessica's funeral details

We have been busy over the last week making arrangements for Jessica’s final journey. It has been incredibly tough and reality has hit us very hard at times. We have chosen the spot for Jessica’s forever bed at GreenAcres, picked out her casket and the last set of clothes she will wear and started to consider the details for the service celebrating her life. We can now confirm the timings and location for the celebration and wake, which are as follows:

Celebration of Jessica’s life

Friday 18th May 2018, 1pm at Christ Church, Redford Way, Uxbridge UB8 1SZ

Tea and coffee will be available after the service

Please note that the church car park will be reserved for blue badge holders and the close family members who will be attending Jessica’s burial at GreenAcres.


There is plenty of parking available nearby. The nearest car parks to the church are the Sainsburys car park and the Cedars car park. You can park in Sainsburys for a maximum of 2 hours for £2. Please note that there is ANPR in this car park so don’t exceed the maximum stay of 2 hours. The Cedars car park costs £1.40 for 2 hours for non-Hillingdon residents. There is no maximum stay in this car park, other than being limited to car park opening times (it closes in the evening after the shops shut). There is also on-street parking on Belmont Road although this is very expensive, especially for non-Hillingdon residents and the meters have a tendency to swallow coins. We’d advise parking in Sainsburys or the Cedars instead.


For those coming by public transport, Christ Church is opposite the bus station and Uxbridge underground station. If you are coming by train, you need to exit the station by the side entrance (heading towards the bus station) rather than the High Street entrance.


We would like to ask for donations to Little Hearts Matter instead of any flowers please. The JustGiving page that was set up previously by one of Louise's blogging friends has now closed, but we have set up another JustGiving page if you would like to donate through this.

Jessica’s burial

This will take place at GreenAcres at 3pm and will be a private service for the immediate family and Jessica’s godparents.

Wake

You are welcome to join us for the wake following the celebration of Jessica’s life. This will be held at Chalfont St Peter Community Centre, Gravel Hill, Chalfont St Peter, Bucks, SL9 9QX from 3pm. Tea and coffee and refreshments will be available here.


There is an on-site car park at the community centre and parking is free here. If this car park is full, there is a nearby car park in Church Lane. There is a charge for parking in the Church Lane car park which you can pay at the machines or by mobile phone.


One of Michael's colleagues will be providing minibus transport from the church to Chalfont St Peter Community Centre if you are coming by public transport - thank you Oliver!


If you are thinking of joining us for the celebration of Jessica’s life and/or the wake afterwards, please could you let us know by filling in a very short form here if you haven’t already done so. This is just so we have an idea of what numbers we can expect to help us with some of the practical arrangements.We would also like to ask that people avoid wearing dark coloured clothing if possible.



Thank you for continuing to keep us in your thoughts and prayers. We are very much taking things moment by moment right now and trying to get through each day as best we can.