We know that blood tests, whilst part and parcel of living with childhood liver disease, can cause immense stress to children and parents. So we’re really grateful to James, dad to Jake, for sharing his experience which he hopes will help other families.
Jake received an urgent liver transplant shortly after his 4th birthday following an acute liver failure; this was his first experience of hospital care and the ongoing need for regular blood sampling was never a pleasant experience. Some blood tests were better than others, but the experience was always so variable. It was stressful as a parent not knowing what to expect, and eventually being able to take blood from his central line was a welcome relief.
When we finally left the hospital, we were attending our local hospital in Bristol very regularly for blood tests and we got in to a routine of ‘just getting through it’ – we would often need to hold Jake still, crying, so the blood could be taken; the primary focus became ‘get in, get the blood, get out’.
However the more regular the visits became, the easier the experience was. We got to know the phlebotomists really well and they got to know Jake. We were able to establish patterns of things that were helpful and things that were less helpful. For example, Jake hated the feeling of being cold, so we abandoned the magic cream or magic spray and did everything at room temperature with a jumper on and sleeves rolled up. Despite the familiarity, there was still a lot of resistance and delaying tactics, but we got in to a good groove. We still had to manipulate Jake into position and work through the tears, but we felt we were succeeding.
James thought they had a way of getting through Jake’s blood tests.
As Jake grew stronger, the regularity of the blood tests was reduced to every three months. Jake was also growing older and grasping a firmer understanding of things around him, realising that blood tests could be painful and he had a choice as to whether he would cooperate. The reduction in frequency combined with his increased understanding became a real setback for us. Blood tests became really hard again; it felt like a demoralising step backwards after the previous positive progress. We would get Jake in to the chair and do all the things we had previously practiced. He appeared keen and composed in the waiting room, but then refused to make his arms available once we made it to the chair. After the test and the tears had subsided, he would always leave the room happy – although as parents we often wouldn’t.
After a number of less-than-ideal experiences, we contacted Kate at the CLDF to see if she could offer any tips and she signposted us to a helpful article Coping with needle phobia – Childrens Liver Disease Foundation (childliverdisease.org) . Kate also encouraged us to consider the whole process – to try and understand if there was part of the process that was causing additional anxiety. We had previously identified a dislike for the magic cream, but changing our way of thinking where the blood test became an experience, starting with getting in the car to go to the hospital, and ending when we got back to the car, was far more holistic than the previous ‘quickly as possible’ approach.
We looked at the things Jake found triggering and tried to remove them from the process, and we looked at the things Jake found helpful and tried to maximise them. Jake has always responded well to choice, conversation, feeling in control and treats – so we focussed on these things, believing that if we could get one good experience, we could rebuild our confidence from there. We drip fed him as much choice as we could: “Would you like to sit in the front or the back of the car? Would you prefer to go in the morning or the afternoon? Which snacks would you like to take? Which arm would you like to aim for? How would you like to sit? Which parent would you like to take you? What would you like to do afterwards? What would you like as a treat? Would you like to watch the blood being taken?”
This approach shifted the focus from a quick, efficient necessity to an opportunity for a nice time with an unpleasant bit in the middle. We also focussed on how we as parents could be at our best. Jake would always favour me as his father taking him. It was difficult to see him reject the support from his mother, but we focussed on achieving the blood test as a team and sometimes team members have to take a step back.
Jake with his ‘team’ – mum and dad, James and Michelle and little brother Max.
One of the big things for me was recognising that arriving at the phlebotomist having rushed from work was not a positive start to the experience. So, we started doing the blood test in the morning before work and before school. This had the massive added benefit of everyone being in a better mood, including the hospital staff. People were less tired, less stressed and generally enthusiastic for the start of the day. As parents we also started recognising the important role of taking control of the process and advocating for our child. This meant doing small things like making sure Jake knew the names of the staff before we got started, making sure everyone had said hello, guiding the phlebotomists to follow the process we had developed and giving Jake choices where it was possible to do so.
And slowly these things worked. We built up a positive momentum, helped by a return to monthly testing, and Jake’s confidence and trust grew. We even did a mini de-brief at the end of each test, focussing on the positives whilst also thinking about how we could do the next one even better. To maintain the momentum between tests, we would periodically remind Jake that he was doing well but there was another test coming soon and it was time to think about a suitable treat for the next time. We turned it into a challenge for him, making it clear that treats were dependent not just on getting the blood sample done well, but also for making progress – albeit in small steps – and sometimes they were very small.
Fast forward to today and Jake has now completed all of ‘the blood test levels’ as he calls them – he will now sit in the chair himself, is happy to attend with either parent and will always have a good chat with his phlebotomist friends. It was hard work getting here and our focus now is to maintain the momentum by reminding him of the progress.
One of the big things I took away from my contact with Kate was just how common struggles with blood tests are – particularly as you get out of the habit of doing them. I felt encouraged knowing it wasn’t just us. Kate also encouraged me to let her know how we were getting on. And whilst perhaps it is of little relevance to her, I made a point of keeping in touch – or sharing my journey with work colleagues – because it helped me reflect personally on how we were doing. Being able to identify progress, regardless of whether it was small, helped us remember we were making progress, and that encouraged us to persevere in the more difficult times.
