Many parents can pinpoint moments that they would rather forget. For Laura
Young, it happened two years ago as she accompanied her daughter Verity to
the Royal Hospital for Sick Children in Edinburgh. Verity, now 5 (pictured
right with Laura), had recently been found to have lupus, a rare auto-immune
disease, and was on the way to her third routine blood test in as many
months.
“The first time, she hadn’t known what was coming and she was fine,” recalls
Laura. “But on the second visit, the nurse had difficulty finding the vein,
the local anaesthetic cream was in the wrong place, it hurt more than it
should have, and that was it — the fear factor was in place. On that third
visit, I couldn’t even get her down the corridor. She kept running back the
other way until in the end, I had to hoist her under my arm, with her legs
kicking in every direction, to get her into the blood room.”
As Verity screamed and clung to her mother like a limpet, it took four people
to get her through the test procedure. “I lay over the bed to put her down
on it, one nurse grabbed her feet, another pinned down her arms while the
third took the blood. She was fighting with every ounce of her strength and
really had turned into a little girl I did not know. I found it hard not to
cry and in fact, when it was all over and one of the nurses said, ‘Mum, are
you OK?’, I did.”
The episode was oneof the most distressing that Laura, 39, has lived through
as a mother — but it also proved to be a catalyst. A former museum curator
who began her career at the Science Museum in London, she has now added to
her CV the role of children’s author. Sandy the Starfish is a
simple but effective book that explains to the preschool child why blood
tests and medicine are sometimes necessary. It is, says Dr Orla Killeen, a
consultant paediatrician and member of the team that treated Verity, “long
overdue in our paediatric wards and GP surgeries”.
“There are lots of children’s books about going to hospital,” says Laura, who
lives in Edinburgh and is married to John, 42, a solicitor. “But the story
tends to be based upon something happening to you before you go — you break
a leg and the doctor makes it better. As far as Verity was concerned, there
was nothing wrong with her until she had to go to hospital — and that was
the problem.”
Verity is the middle of John and Laura’s three children and was a robust,
healthy toddler until Christmas 2004, when she complained of a sore knee.
Within a week, the sore knee had become a sore ankle and Verity also
developed hot, swollen wrists and hands. She was referred to a
rheumatologist who was concerned about her joints, but also her platelet
count, which was perilously low. “We had been expecting them to say
arthritis, but they were talking about leukaemia.” After an agonising wait,
a bone marrow test came back negative for leukaemia, but positive for lupus.
“I think we were so relieved that it wasn’t cancer, it took a while for the
reality of lupus to sink in.”
Verity has systemic lupus erythematosus (SLE), an incurable condition in which
the patient’s immune system becomes hyperactive and attacks connective
tissue, causing inflammation. It affects 50,000 people in the UK, 90 per
cent of them women, but is rarely found in anyone under 15. Apart from
swelling and painful joints, symptoms include extreme tiredness and skin
rashes. If left untreated, SLE can lead to the destruction of vital organs
and it used always to be life-limiting, but the advent of steroid drugs
means that many patients now have a normal life expectancy.
But drugs alone are not enough to ensure the effective management of her
treatment. She is going to need continuing blood tests — an average of one a
month — to check her platelet and antibody levels so as to predict
flare-ups. “It was that thought that made me realise I was going to have to
do something to get her over her needle phobia,” says Laura.
All children needing injections are routinely provided with “magic” local
anaesthetic cream to numb the area where the needle has to be inserted.
“Verity was having that every time, so we knew she wasn’t feeling pain — it
was all in her head. But the cream takes about an hour to work, and once we
had applied it, she would know what was coming and go into complete
meltdown.”
Laura spoke to staff at Verity’s nursery “who were brilliant in playing
doctors and nurses with her and getting her to role play her tests”. She
also consulted hospital play therapists who organised for Verity to have
some fun time making glittery butterfly pictures “so that her visits weren’t
all horrid, and she had something to take home and show everybody”. She
searched for further material and picked up some useful tips from the
charity Action for Sick Children (www. actionforsickchildren.org.uk) such as
blowing bubbles in the car park before they went in because it encourages
deep, regular and calm breathing. “There was plenty of advice out there for
me, but what was lacking was something that Verity could relate to.”
Sandy the Starfish developed from a bedtime story Laura made up in her
attempts to help her daughter relax. Like Verity, he has to have a blood
test and a plaster followed by some medicine. He starts off “feeling blue”,
but after seeing Doctor Dolphin, is back to his old, orange self. Laura
sketched out her own version, and then commissioned a cartoonist to bring it
to life. Encouraged by the medical professionals she showed it to, she then
decided to self-publish it in a lift-the-flap format to encourage dialogue
between parent and child. She has also established an interactive website
with advice for parents and colouring-in sheets and games for children.
Lesley Joliffe, a practice nurse for Lothian Health Service, says: “Verity’s
situation is unusual. Most preschool children do not need regular blood
tests, but we often have to do nasty things to them. All have to have
inoculations, and there are many conditions that will require injections.”
She has arranged for copies of the book to be available in her surgery
waiting room. “The better prepared children are, the less stressful it is
for them, their parents, and for us.”
As for Verity, “she loves the book”, says Laura. “And is certainly calmer now.
We still have lots of reassuring cuddles, but we no longer have to pin her
down.” www.sandystarfish.net
How to beat a fear of jabs
It’s perfectly normal for children to be wary of needles — most adults don’t
like them either. But the more relaxed we are the less pain we feel, so good
preparation can make all the difference. Explain what will happen. Younger
children need only a simple outline, the older child may want a fuller
explanation. Timing is important. Generally, the younger your child is, the
closer to the test you should tell them. Reassure small children that they
are not being injected as a punishment — many think they are. Take a
favourite toy or blanket, as well as distractions — books and games — for
the waiting room. Blowing bubbles can help to calm a child both by providing
a fun diversion and inducing deep breathing. A sense of control can make
children feel calmer. Ask them which arm they would prefer to have the
injection in, or if they would like to hold your hand. Don’t dismiss bribery
and rewards. A sticker or a treat on the way home will not do any harm.
Action for Sick Children publishes several advice leaflets, including a
guide to helping children to cope with needles. www.actionforsickchildren.org.uk
When I was 8 years old, I had a severe bone injection which almost killed me. I was in the hospital on Okinawa as my father was in the U.S. Army. I was having blood tests everyday and sometimes twice a day. On top of that, I was having penicillin injections every 3 or 4 hours since it was before the time of long lasting penicillin (1949-1950). After a while I got to the point that I fought every blood test and penicillin injection. Of course back then there was not the talk of rewards or books about sick children. Instead I would get a spanking from mother for "misbehaving". I wish that doctors and parents back then knew more about caring for sick children the way they do now. It took a long time for me to get over my phobia of needles in anyway, shape or form. Now I have Lupus and have blood tests routinely which do not bother me the way they used to.
Claire Suss, Florence, South Carolina, USA