Surgery, scrap-booking and a six year old superhero

By Jennie Jones

This story is about how we helped our son Rhys to prepare for his last operation and also advice for other parents who have school age children who are preparing for surgery.

This is Rhys. He is eight years old and, like any heart parent, we think he’s amazing and a super hero.

In January 2018, at six years old Rhys had his third heart surgery. His first surgery was in 2011 when he was four days old for coarctation of the aorta.

In 2015 when he was three years old, he required surgery again – this time to remove a sub-aortic membrane. Although we knew it was likely that the membrane would return one day, we hoped Rhys would be much older before that happened.

Unfortunately, in summer 2017 we were told that the membrane had returned and Rhys would need surgery again.

Although this would be his third surgery, and we as parents knew what to expect, Rhys was too young to remember or understand what had previously happened. We wanted him to understand more this time and be open with him – the unknown can be scary.

Like any six year old he normally asked a LOT of questions, however on this occasion he didn’t seem to know where to start. It was almost as though he needed some initial information to prompt him to ask questions.

We spoke to Trish, the Cardiac Liaison Nurse, who was great and pointed us in the direction of a few books. We found a book, aimed at 7-11 year olds, pitched perfectly for Rhys – even though he was six. The book explains to the child who they will meet at the hospital including how to pronounce the names phonetically (“car–dee–ack fizzy–ol–o–gist”), the tests they will have and the machines they will encounter. It follows the journey from pre-op outpatients, preparing for going into hospital, getting ready for the operation on the ward, theatres, ITU, and recovery on the ward through to going home.

Rhys absolutely loved the book. He read it multiple times with us, other family members and sometimes we would find him reading it on his own. Then the questions started! Most of the questions we were able to answer but a few we directed to Trish who was really helpful and supportive. By the time Rhys was due to go in for his operation he was fully up to speed with what was to come and very relaxed.

As Rhys was at school age he would need to have five to six weeks at home to recover, which was a long time to be away from his classmates. One of Rhys’s teachers suggested that he produced a scrapbook of his time away and he could then present it to his class when he returned to school. It would help to explain to them where he had been and it would also be a good activity to keep him sat in one place when he got his energy back!

We took photos of Rhys packing his bag to go into hospital, having his pre-op investigations on the ward and eating his last meal before going nil by mouth. The next morning we took photos of him going down to theatre. It felt strange documenting something that we would all probably rather forget, but it was a good distraction for Rhys. Five hours later and Rhys was in PICU. The operation had gone well and he was awake.

It was difficult to complete the PICU element of the scrapbook. Any photos we took of Rhys had to be carefully angled so that we didn’t show anything too unpleasant. We wanted the book to be an honest account of what had happened but we also didn’t want to upset any of the children at his school. We appreciated that what is normal to us may appear scary to them. PICU is also not somewhere that we felt we could just wander around and take pictures. I explained to the staff on PICU about the scrapbook and they said they would help. They often take pictures of the patients on PICU to document their stay in a mini scrapbook. Instead of creating a separate version they gave me copies of the photos they took to put in our book. I also gave them a list of machines and they took photos of them too. Rhys stayed overnight on PICU and then moved back to the ward the next afternoon. He was doing amazingly well.

We continued to take photos back on the ward. We wanted to list the different staff that he met. Rather than getting each person to pose for a photo, we took photos of the display boards on the wards and in outpatients. Most of the staff that he came into contact with had a photo on a board and we managed to get photos of his anaesthetist, cardiologist, cardiac physiologist, nurses and play specialists. The one person we were missing was his surgeon. He had only been with the Trust for a few months and as a result there were no photos of him displayed anywhere. I asked the Matron if there was a photo anywhere and she said she would come back to me. Later that day, the surgeon arrived on the ward and said “I hear I need to have my photo taken”. Rhys took a photo on his iPad and that is one of our favourite photos in the book. It was really lovely of him to take time out to do that for us.

As Rhys’s operation was a re-do, we were told that he may be in hospital for a week or possibly more. Rhys had his operation on Monday and on Thursday we were told we could go home. I honestly think he is a real life superhero! Although the operation was over Rhys would still have to explain to his classmates where he had been for another five weeks. We documented his visits to outpatients including photos of him having an ECG and ECHO. We took pictures of the puzzles and Lego that he built as well as taking note of the films that he watched and the names of all the people that had visited him at home. Towards the end of his time off we were able to go on a few days out to The Space Centre and Cadbury World which we also photographed.

As the time approached for Rhys to return to school it was time to put all of the photos in the scrapbook. I wanted Rhys to write comments against the photos in his own words so it was a record of what he remembered and felt rather than our thoughts and feelings as parents. Over the course of a few weeks we talked through each of the photos.

As a family we talk about Rhys’s operations regularly. It is not something we pretend never happened but I realised I had never really asked him how he felt. Because, as parents, we are the ones that explain what is happening we project our interpretation of events on to them and as a result we assume that our children see it in the same way as we do. It was fascinating to hear Rhys’s recollection of events and taking that time out to talk about it in detail was like therapy.

The finished scrapbook was really special and something that we are all really proud of. Rhys loves showing it to visitors and sometimes he gets it out and has a little read on his own. He took it into school and the children really enjoyed hearing about his experience, especially seeing photos of his echo and x-ray. I am proud of the fact that the scrapbook may help his classmates feel less worried if they or their family ever need to go into hospital. I also found that adults like to look at it too. People are naturally inquisitive but very often don’t know if they are ok to ask questions or where to start – the scrapbook helped to start conversations.

It is really difficult when a school age child needs an operation and trying to manage their fears and anxieties as well as your own. My advice to anybody in that situation would be to be open and honest and try to give them as much information as possible. It’s natural to want to protect them from the reality of the situation but I think being in the dark can be scarier. I would recommend completing a scrapbook. It was lovely exercise to complete together and helped us all through the experience and to talk about it afterwards.

Rhys is now eight years old and enjoying life including playing for his local football team. We are immensely proud of how he dealt with his last operation and the amazing boy he is growing up to be. We don’t know what the future holds for Rhys but if he does require more surgery I feel the scrapbook and the positive experience he had this time will help him through it…………..and also his super powers!