There’s no reason to be afraid, says brave Olivia
After going through a nine-hour heart surgery over a year ago, an 11-year-old wants to form a support group to help other children going through medical trauma.
Learning Express student Olivia Burgess this week marked a year after the life-saving surgery at Boston Children’s Hospital in Boston, Massachusetts. Olivia has spent most of her life dealing with various medical conditions including a severe case of Systemic Onset Juvenile Rheumatoid Arthritis (SoJRA). JRA is a childhood disease that affects the joints, and an overlap of Paediatric Systemic Lupus Erythematosus (SLE), a serious autoimmune condition that can affect joints and organs.
Last May, she suddenly developed a suspected blocked artery in her hand. She was flown off the island by air ambulance. Five hours after arriving in the emergency room at Boston Children’s Hospital, she was being admitted to Cardiac ICU. She was put into a medically induced coma to help stabilise her condition and doctors told her parents that she probably would not survive the night. Part of Olivia’s aortic valve had deteriorated and her heart was not able to pump oxygenated blood to the rest of her body.
“The suspected causes were one of three options, but to this day, the cause still remains unclear,” said her mother Traci Burgess.
Olivia, pulled through, however, and went on to graduate with honours from Elliott Primary School in June of the same year.
“Although she was always willing to talk about her SoJRA, she didn’t really like to talk about her heart surgery with anyone,” said Ms Burgess. “Now a year has passed and she is ready.”
Olivia said, at first, she thought there was no one else in Bermuda who had experienced what she had been through.
“Then last month we started talking about how there are probably other children who have gone through worse things than me,” Olivia said. “We talked about how we should form a support group to help children who are having trouble communicating what they’ve gone through.”
As Olivia chatted with The Royal Gazette she sketched in a notepad. She said drawing and doodling were some of the ways she had learned to cope with stress.
She said actually, the heart surgery wasn’t the hardest thing she has dealt with, because she doesn’t remember much of it.
“I had knee surgery, and that was probably the hardest thing,” she said. “It was painful, but I got through it.”
Not only is she hoping to help others, but she also wants to gain a little insight into other people’s experiences and coping mechanisms.
She hopes to one day become a veterinarian as she loves animals. For now though, she is looking forward to going on a trip to Texas with a girls’ club that is part of the organisation Phenomenal Woman.
“I can’t wait to go to Six Flags Theme Park,” she said. “I really want to go on a roller coaster.”
Her mother says she is feeling a bit anxious about it, but is thrilled that Olivia is ready to go, and has no fear.
“The concept for a support group has come from years of managing chronic illness,” said Ms Burgess, “and having to teach Olivia to have strength and finding different ways to manage the pain, ways to deal with stressful situations. We have chosen to take a positive path. We’ve seen a lot of other children and families who are literally paralysed by fear, or they are stuck in the trauma of what has happened and they have a difficult time moving past that. I don’t want Olivia to be stuck in anything negative. I want her to be able to pursue her dreams and goals and be as successful as she can.”
Ms Burgess planned for the support group to have a parent side that would include speakers, and focus on topics such as navigating the insurance nightmare, dealing with siblings, and therapeutic resources, among other things.
Olivia hoped that the child side of the support group would have meetings once or twice a month where children shared their experiences. They would also do fun activities together such as mini golf.
“Having been through this has definitely given me a different perspective on life and helped me to appreciate the little things,” said Olivia.
To other children who may be going through a medical crisis she said: “There is no reason to be afraid. Everything happens for a reason and it is all part of God’s plan.”
For more information about the support group call 599-3210 or e-mail bdafamilies@gmail.com.
In 2002, Olivia was diagnosed with a severe case of Systemic Onset Juvenile Rheumatoid Arthritis (SoJRA) at age three and a half. JRA is a childhood disease that affects the joints. There are several different types of JRA, but systemic onset juvenile rheumatoid arthritis is the rarest form.
It includes high, spiking fevers, rash, and joint aches. The word “systemic” means that it affects the entire body. Olivia’s disease process has been difficult to control over the years, and there have been very few days in her life that she has lived pain free.
February, 2013: Olivia was diagnosed with an overlap of Pediatric Systemic Lupus Erythematosus (SLE), a serious autoimmune condition that can affect joints and organs.
For the next four months Olivia was in and out of King Edward VII Memorial Hospital and back and forth to Boston Children’s Hospital for follow up appointments with her medical team. Her family was preparing to be admitted to Boston Children’s Hospital in late May, 2013, for a full work-up and intense treatments to hopefully bring the disease under control.
May 21, 2013: Olivia suddenly developed a suspected blocked artery in her hand. Doctors here called for an air ambulance that afternoon and she was on the flight early the next morning.
May 22: Olivia was being admitted to Cardiac Intensive Care Unit (ICU) at Boston Children’s Hospital. She was put into a medically induced coma to help stabilise her condition and doctors told the family that she probably would not survive the night. Part of Olivia’s aortic valve had deteriorated and her heart was not able to pump oxygenated blood to the rest of her body. The suspected causes were one of three options, but to this day, the cause still remains unclear.
May 29: Olivia underwent an eight-hour open-heart surgery.
June 20: Olivia walked across the stage at Elliot Primary School for her P6 leaving school ceremony (graduating from primary with having maintained consistent honours throughout). She still had an IV drip in her arm at the time.
