Sadly, needles – and particularly blood tests – are part of having a childhood liver disease but that doesn’t mean that every child can take them in their stride.
Kelly’s experience with her son, Bobby, is typical of many parents we speak to.
“Bobby has always had some degree of fear of needles, blood tests and cannulas, making admissions and general clinic appointments difficult”, says Kelly.
“This got worse, however, around the age of seven when he became poorly with cholangitis and was subsequently diagnosed with aortic stenosis. This meant we had a few weeks at our local hospital and were then admitted to Kings for his routine OGD. This involved scans, cannulas and lots of blood tests (often involving being woken in the night) which made him very upset.
“When your child is poorly, they really just want to be left alone but obviously the doctors need to investigate. It’s not just the procedure itself – the build-up for Bobby before having a cannula or a blood test is really hard and he will get himself into a state.
“He’ll ask lots of questions – ‘Is it going to hurt? Why do I have to have it?’ And if he has too long to think about it, this panic will turn into upset and even anger – ‘I don’t want it, I’m not having it, I don’t like you or this liver’.
“I try my best to keep calm even though inside I do feel like crying as it is hard for a mum to see her child so upset and scared.”
In some cases, it is the procedure itself which causes the problem as Verity found with her son:
“It is often a struggle for the nurses or doctors to find a suitable vein when they do Albie’s blood tests. While he was in hospital before and after his transplant he sometimes had three blood tests a day and had cannulas put in. Staff often needed to have four or five attempts at getting a vein, which was obviously upsetting for Albie.”
Because this issue is so widespread, CLDF’s Families Officer, Kate, has been seeking the advice of a phlebotomist and play therapist in order to put together some tips for parents.
Be your child’s advocate
This is so crucial, and yet can seem so impossibly hard. To be a great advocate you need to build open channels of communication with the doctors and nurses you are dealing with. Engage them in a dialogue to develop a plan for the procedure. This doesn’t need to take long, but will clear up any misunderstandings, and ensure that everyone is following the same plan. Explain what your limits are for attempts, and how you will indicate if you need them to stop. You know your child the best, and you will have the best idea of how much they are able to tolerate.
Understand the test
What are they testing for? How many vials need to be taken? Understanding these things will help you develop a plan for the test. If your child will possibly end up needing an IV afterwards discuss this with the medical team, and ask them to put one in straightaway – one puncture is always better than two! If it’s a simple test, can they get the results from a finger prick? Don’t be afraid to ask questions, and don’t be afraid to insist on alternate plans even if it is not how things are usually done.
Know your child’s body
If they’ve had tests before, remember what has worked and what hasn’t. Keep a note of any easily accessible veins. Ask for the blood to be taken from the opposite arm that your child uses most.
Involve your child in the process
Talk to them about it. Ask for their input. Give them choices where you can. If your child finds the blood test particularly upsetting, validate their feelings and engage with them to help them process the trauma. Teach them how to be a good advocate for themselves in the future.
Explain the procedure to your child. Talk about how, as their parent, it is your job to keep their body healthy. Part of this is that sometimes you need to make decisions about their body on their behalf, and this is one of those times. Kids undergoing medical procedures often feel confused about why in these situations they are restrained and hurt.
You need support too
If you find blood tests hard, take a support person with you. Warn them what it might be like, and make sure you pick someone who won’t end up crying on the floor before the procedure has even begun. A difficult blood test can leave a parent feeling shattered. Make sure you have someone who can pass you the chocolate and drive you all home if need be, and then feed and play with your child while you work on compartmentalising the trauma in a totally healthy way.
For tiny babies…..
- A tiny baby will not understand what you tell them about this procedure. Explain it to them in advance anyway – this is good practice for when they are a bit older.
- Have you got food ready for after? Something almost instant like a bottle or breastfeed or a pouch is easiest. This will help soothe the baby as soon as it’s over.
- Can the sample be from a heel or finger prick? Some kids don’t bleed as well from these points, and it also depends on what they are testing for. Ask first and if possible, try this route over a cannula.
- If it does have to be a veinous sample get the most experienced person there to assess your child’s veins. Use all the tricks: bending the hand, a torch under their palm in a dark room, drawing on them with ballpoint pen. If they find a good vein remember where it is for future use!
- Are they asleep? Leave them asleep – they might not even wake up!
- Ask for a syringe of glucose syrup, or take your own syringe filled with sugar water. Feed this to your baby right before the test to release pain-relieving endorphins.
- See if you can hold the baby on your knee – it’s often easier than trying to restrain them on a bed.
- Hold on tightly.
- Try not to cry, or cry all over your baby.
- Go and buy yourself a treat.
For 1 – 2 year olds
- Explain to your child what is going to happen. Children this age have a wacky sense of time, so use your judgement how far in advance they need to know to minimise stress.
- Get snacks together… Favourite snacks, drink of milk, dummy, lollypop.
- Glucose syrup doesn’t work for older kids. Instead put EMLA cream on the back of your child’s hands and in the crook of each elbow 40 minutes before the test. You can ask your doctor for some, or arrange to pop in to the clinic prior to the test to get it applied.
- Check what type of blood test this is going to be. If it’s a cannula, decide how many chances they get to hit a vein. Your child does not need to become a pin cushion because one person can’t find a vein. Talk to the medical staff about this before the procedure so everyone is clear on what will happen, and what the contingency plans are if they can’t get the sample they need.
- Swaddle your child if possible, otherwise hug them backwards in a chair, with all of their limbs cuddled in to you except the one arm/leg that is needed. This can stick out from under one of your arms.
- Get someone to distract your child. Bubbles are great.
- Expect crying and screaming. Your kid is being forcefully restrained and poked at without their consent. This is alarming and in any other circumstance would be unacceptable. Validate your child’s feelings. Commiserate with them. Reassure them calmly.
- Scream on the inside.
- Go and get you and your kid some cake and stickers.
For 2-4 year olds
- Tell your child they need a blood test. Explain why and let them ask any questions. Let them talk directly to medical professionals if they want. If they’re upset acknowledge that blood tests do indeed suck. Discuss how most blood tests happen pretty quickly, and that they are important for keeping our bodies healthy.
- Ask your child to choose a favourite toy to take.
- Snack, snacks, snacks. Treats, treats, treats.
- Apply EMLA cream. If you aren’t able to do this, ask for a freezing spray like Vapocoolant to be sprayed on the site where blood will be drawn from.
- Have you got Peppa Pig or some other kids’ show up on your phone yet? This might not work as a distraction during the actual procedure, but is good for calming nerves beforehand.
- Discuss the plan with the medical team. Don’t worry about taking up precious time – better to have everyone on the same page before the blood draw, so you’re not trying to communicate over the sound of ten thousand cyclones of screaming mid-procedure.
- Give your child choices where you can. Ask if they would prefer to sit on your knee or on the bed. Ask if they would like bubbles or a book. Ask what song they want you to sing.
- Reassure your child. Talk about what you will do after it’s finished. Keep your voice steady and calm.
- Have some fancy plasters at the ready. Let your child put one on their toy.
- Afterwards wipe your child’s face with a warm flannel. Go get yourselves some cake!
For older children, all of the above applies but it will be harder to distract them. The flip side of this is that they can understand more and can reason more easily. Validate their worries and fears, remind them that they managed it before (if this isn’t their first test) and let them choose a treat or activity once it’s done.
Kelly and Verity are already putting some of those tips into practice.
“I have learnt a lot about what definitely doesn’t work and what might,” says Kelly. “ Bobby doesn’t like to look away or be held tightly. He likes to be in some sort of control so I will ask him which arm it should be and whilst his having the blood test I will constantly talk to him asking him questions to distract him as best I can. I have also asked if we can see a play therapist when having bloods to make it easier.”
And Verity has decided that for Albie’s weekly blood tests, even though the community nurse would come to the house, it’s less stressful to go to the local hospital.
“I apply the numbing cream at home so it has time to take effect. He spends a bit of time with the play therapist before his blood tests, to take his mind off it. He then has an iPad to play on during the tests. This makes it slightly less stressful for him, although it is always a gamble whether they’ll be able to get the blood easily or not! Also now he usually has the same nurses each time, so they are aware it’s tricky and it makes it nicer for him as they’re more familiar. Yes it’s more time consuming but certainly less stressful for us both.”
Every child is different so it’s important to find out what works for you. If you would like further support with this issue please contact us at firstname.lastname@example.org.
And if you have a tip which we haven’t mentioned above which you’d like to share with us please let us know at email@example.com and we’ll mention it in our next post on this subject.