By Connie Tabbert
Editor
A family of a three-year-old girl who suffered a stroke following a grave illness is humbled by the moral and financial support it is receiving from family, neighbours and strangers.
Shirley and Hugh Byce’s daughter Jorja became ill on June 10 with a high fever, vomiting and diarrhea. The next day, her mom took her to the doctor’s, who sent her to Renfrew emergency for an intravenous of fluids due to being hydrated.
Ms. Byce thought she’d be home around 9 o’clock that night, but that didn’t happen due to Jorja continuing with a high fever and diarrhea. Jorja spent the night in the emergency department. On June 12, Jorja was admitted to the hospital.
Due to the diarrhea not clearing up, Ms. Byce and Jorja were sent to Children’s Hospital of Eastern Ontario (CHEO) on June 14. Bloodwork was done and it was discovered Jorja had HUS (hemolytic uremic syndrome).
“Her blood levels were all out of whack,” she said. “Her kidneys weren’t functioning. HUS is the red blood cells breaking down and releasing toxins into your blood. Essentially, she’s poisoning herself and her immune system wasn’t correcting it.”
The cause, while not 100 per cent certain, was due to a strain of E.coli, her mom said. When Jorja’s red blood cells got down to below 70, she needed blood transfusions. Ms. Byce noted usually one blood transfusion is required. For Jorja, she received nine blood transfusions.
Jorja was discharged from CHEO on Sept. 5. Of those almost 13 weeks, Jorja spent 11 days in Sick Kids in Toronto, July 15 to 26.
On June 20, the nephrology team at CHEO, as part of their research, offered the Byces the opportunity to try an experimental drug on Jorja that is not approved in Canada, but is approved in Europe. It was expected the drug should work within 24 to 48 hours. It took the drug three days before it worked on Jorja, Ms. Byce said. She received two doses of this experimental drug seven days apart.
Ms. Byce said they agreed to try the experimental drug because, “It didn’t look like she was going to turn around. We said yes right away. We had faith in the medical team. We had great confidence in them.”
On June 20, Jorja also suffered a stroke and the neurology team in Ottawa began sending the MRI pictures to Sick Kids for a second opinion.
“She didn’t move, didn’t cry, didn’t do anything for five days after the stroke,” her mom said. “She just lay there gazing off into the distance with a blank stare. She had no vision.”
Jorja did come back slowly, crying, moving her eyes and she could see things, her mom said. She began talking and eventually could lift her right hand and hold onto objects. Her left side remained paralyzed.
The neurology team in Toronto wanted to see Jorja and assess her themselves. While in Toronto, they performed a cerebral angiogram, which they don’t do in Ottawa, as well as a lumbar puncture to see if they missed any bacteria that may have caused the HUS, Ms. Byce continued. Nothing was found and Jorja was sent back to CHEO.
Ms. Byce noted HUS is something that can’t be treated with antibiotics, because it could cause the red cells to break down faster.
For five weeks, Jorja underwent rehab therapy at CHEO before being discharged on Sept.5. She continues to do out-patient rehab at Renfrew hospital two days a week and must go to CHEO for various medical appointments, Ms. Byce said.
“Jorja’s HUS is inactive,” her mom said. “It was confirmed inactive on July 22.
“Normally HUS runs its course in 10 to 14 days. Usually they receive one blood transfusion and their body kicks in and reverses everything. Usually they don’t have a stroke.”
Due to Jorja suffering a stroke while having HUS, there is no one in the world to compare her to, Ms. Byce said.
Ms. Byce said for much of the time she was with Jorja. When she did go home, family and friends were with Jorja, so she was never left alone. Ms. Byce slept right beside her almost each night.
Mr. Byce, while wanting to be with his daughter and wife, was back home taking care of the couple’s three other children – Dallas, 6, Nash, 4 and Levi, 6 months – and their dairy operation. He did come up a few days to be with them.
Ms. Byce also noted because of her sisters Bernice Bullock and Janelle Hood she was able to remain at Jorja’s bedside
“They looked after my boys while Hugh was busy with the farm and helped take care of Hugh,” she said. “The boys did well. Their lives remained stable because it was summer and they were at home and in their own beds. Hugh was outside and they could be with daddy when they wanted to.
“Levi is a very happy baby, he’ll go to whomever. He’s done very well.
“I had my little world down there and Hugh had his world here,” Ms. Byce said. “He was going through a totally different side of the experience. He wasn’t there day by day. Many days he was very distracted at home, because he wasn’t down there.”
The farm work continued, which was why Mr. Byce couldn’t stay there, but with relief milkers, he was able to spend some time with his daughter. However, she knows her husband found it difficult knowing his little girl was in the hospital and he couldn’t be at her bedside all the time.
With Jorja being so ill, and her family in good hands, Ms. Byce said she never thought about anything except being at her daughter’s bedside.
“Jorja needed me,” she said. “She was very sick.”
While Jorja is home, there are still some medical issues she is dealing with, such as high blood pressure. She will be assessed in six months to see if she can get off blood thinning medication.
As for complications following the stroke, Ms. Byce said, “Miraculously, she’s come back amazingly fast. In rehab, we’re working on her walking and she’s starting to take steps a lot better with a little bit of assistance from one person.”
Jorja is moving her left arm a little bit, with hopes there will be a full recovery, her mom said. It’s believed she will walk again on her own. She has no vision in her left eye.
Prior to June 11, Jorja was a “regular, happy, healthy, bouncy three year old girl.”
Ms. Byce isn’t sure if her daughter understands what happened, but she does get excited doing something new.
“She was excited when she could finally lift her head,” she recalled. “She would say, Mom, I’m sitting or Mom, I’m walking. So she’s very excited.”
Ms. Byce believes Jorja remembers things before the stroke, but doesn’t react the same way an adult does when they know they should be able to do something and can’t. She will ask to do something, and she’ll be told she has to wait until her arm or leg gets better, and she’s fine with that.
“Subconsciously, she sees something and she wants to do it because she knew she could, but it doesn’t really faze her that she should be able to do it still and can’t,” Ms. Byce said.
Jorja is happy and isn’t upset with her situation or frustrated, she’s focused on getting better, she added. She’ll pull herself up with the furniture and gets excited for doing it, as if she’s just doing it for the very first time.
Ms. Byce noted Jorja is back to speaking where she was prior to the illness. For the damage shown in her brain from the stroke, she was not expected to progress this fast on all levels.
Jorja seems to be the same little girl as before with her disposition, but the right side of her brain is over-active due to the stroke. One of the side-effects of an over-active brain is she doesn’t like to be touched.
“For a long time, we couldn’t even hold her,” Ms. Byce said.
“By the grace of God I think she’s been able to get back a lot of what she had,” her mom said.
While Dallas and Nash know Jorja has been ill, they’ve been excited when she came home on weekend passes. They understood the concept she had to go back to the hospital to get stronger and better. They are good knowing she is limited in what she can do, Ms. Byce said. They have been heard to say that once you are better we’ll do this and that. They do remember that she used to run and play with them, she said.
Now that Jorja has been fully discharged, Ms. Byce said they go to rehab twice a week and will do exercises at home as well.
“We’ll have to try and help her with her exercises to make sure she doesn’t lose any muscle tone,” she said. “Physio was coming in and doing motion movements. We’ll have to do that now. She doesn’t have full mobility, but it’s coming.”
As Jorja grows, a developmental pediatrician from the Ottawa Children’s Treatment Centre will be following her.
Ms. Byce said it hasn’t been easy for her, but family and friends have been wonderful in their support. She would get phone calls and visits from those who lived by.
“We’ve been supported a lot,” she said. “We’ve had great community support. “People have been bringing meals, calling and asking about her, and praying for her.
“It’s been a very humbling experience. You hope never to be at the receiving end, but definitely this is a small community with a big heart. They’ve definitely proved that to us.”
Ms. Byce said there have been generous donations sent with cards and stuff. The money will be used for Jorja and her family’s expenses at the hospital, such as gas to and from the hospital, food (not for Jorja), special orthotics and shoes. While she was in hospital, Ms. Byce remained at her bedside, because there is a chair that turns into a single bed.
The Pat Banks Memorial Golf Tournament was recently held at the Oaks of Cobden and $9,600 was raised and donated to the Byce family.
Ms. Byce was also able to go to the Ronald McDonald room in the hospital that provides showers, laundry facilities and a kitchen.
Ms. Byce said a strong faith and great support from area churches have been wonderful.
“For now, the worse has been past,” Ms. Byce said. “Everything is now on the right track with Jorja.”
“We have a whole new appreciation for what people go through when a child is severely ill.”
Family life will now return to as normal as it can be, she said.
