Taking control of treatment
When Andie Morrison was only nine weeks old, her tiny frame was overcome by mysterious flu-like symptoms. Her parents, Jenn and Shawn, rushed her to Children’s Hospital at London Health Sciences Centre, where she was diagnosed with a rare blood disorder called Diamond Blackfan Anemia (DBA). It would take three blood transfusions in the Paediatric Critical Care Unit (PCCU) over the course of 24 hours to save little Andie’s life.
“With DBA, the individual is unable to produce a sufficient number of red blood cells, which are responsible for circulating oxygen around the body,” explains LHSC Paediatric Haematologist and Oncologist, Dr. Lawrence Jardine. “So the patient must receive blood transfusions, approximately every four to six weeks.”
Since her diagnosis, Andie and her family have been working together with staff and physicians at Children’s Hospital to care for and monitor her condition. Her life-long management plan includes receiving blood transfusions every three weeks and nightly doses of a subcutaneous (under the skin) medication that helps to remove iron from her body.
“Blood transfusions deliver a high dose of iron,” explains Dr. Jardine. “This can become problematic when you receive several, regular transfusions, such as Andie has, because in high concentrations, iron can become poisonous. Therefore, we have to help her body get rid of it with medication.”
Considering the potentially dangerous implications of iron overload, it is very important to ensure that Andie’s medication to remove it is working properly. Annual magnetic resonance imaging (MRI) scans provide medical staff with a picture of Andie’s liver function and its iron-concentration. However, the loud sounds of the machine along with the relatively small space inside MRI, can make undergoing this scan scary for children. LHSC Child Life Specialist Kyna Patterson has helped children and teens through the process and is familiar with the challenges.
“MRI machines are shaped like a tunnel and are very loud,” she says. “Not only is the machine itself intimidating, it requires a child to lie still on their back and move into the tunnel alone for upwards of 20 minutes. The small space inside can cause children and adults alike to experience claustrophobic feelings.”
Like many young children, Andie used to have to be sedated in order to undergo the scan. But recently, the procedure became a whole lot easier thanks to a new innovation called Cinemavision goggles.
“Cinemavision goggles allow patients to view their favourite movies while undergoing a MRI scan,” explains Patterson. “They can provide children and teens with an alternative focus as well as a physical barrier so patients do not see the inside of the tunnel.”
The goggles also provide an intangible but powerful benefit for patients – one that often eludes children – empowerment and a sense of control over their own treatment.
“Being in a hospital can disturb a child’s sense of normalcy,” says Dr. Jardine. “These goggles provide children with the ability to participate in their care and be present."
"When a child can complete a scan without sedation it not only alleviates the risk associated with the medication, but it also provides the child an opportunity to develop a sense of mastery over their experience,” adds Patterson. “Parents are often amazed at how resilient their children are when they realize that they have completed something that some adults find difficult and the sense of pride that results, is astounding.”
Andie and her mother Jenn can attest to the benefits of using the goggles, given their anxiety before Andie’s first MRI scan without sedation.
“I was nervous and Andie was too,” explains Jenn. “But the nurse went through the procedure with us and Andie was so relaxed during the scan she almost fell asleep. For me, it was such a drastic difference from one experience to the next. Those movie goggles are phenomenal and there’s no way she could have undergone a MRI scan at seven years old without them.”
Andie watched Disney’s animated movie Frozen during her MRI scan. The experience changed her whole perception of the scanning process. “The machine itself is kind of scary because when you get inside, you can’t move or talk,” she says. “But now it’s really, really easy. It feels like I was scared for nothing.”
And for any other patients, young or old, who have to undergo the procedure, Andie hopes they take her words of wisdom to heart.
“Don’t worry. You don’t have to cry. You get to lie back and do nothing and watch a movie – everyone else is doing the work,” she says. “If you ever have to go to the hospital don’t be scared – they’re going to help you and not hurt you.”