'My little doll is a fighter'
Sadia Qureshi rarely leaves her daughter Zoya’s bedside at Holland Bloorview, where a dip on an oxygen saturation monitor prompts her to suction secretions from her daughter’s tracheotomy. But every other night her husband Saqib sleeps at the hospital and Sadia goes home to her 11-year-old son Humza.
On one of these nights Sadia was cleaning Humza’s room when she inadvertently picked up and broke a toy Lego car.
“Mommy, what have you done?” her son cried out. “He’s never spoken to me that way before and he was very angry,” she remembers. “I told him to relax, that he could make another one. And he said ‘No Mommy. You have NO idea!’
“I asked him why he was so upset and he said: ‘Zoya made that and I’m not sure whether she will be able to come home to make it again.’”
Humza’s sister had made the Lego car when she was a healthy French immersion kindergarten student who loved making her family cards with rainbows, stars and hearts; adored animals and Michael Jackson; and dreamed of a puppy of her own. That was before a sudden onset of intractable seizures that have kept her hospitalized for almost a year—sometimes on life support.
“That poor boy,” Sadia says. “I knew he understood that Zoya’s situation was very critical, but we were not thinking about him. I started to cry and then he started to cry. I told him ‘I pray to God she will come back to play with her toys again. And if you want to talk about Zoya, always talk about her with me. If you want to cry, I will cry with you. We will cry together.’”
Sadia says she and her husband had freely shared their emotions about their daughter’s life-threatening illness, but she realized this openness needed to be extended to Zoya’s brother.
“It’s so hard for us to hold our fears, our emotions,” Sadia says. “So we cry when we want to cry. And we encourage ourselves. We tell ourselves ‘Whatever happened, happened. And we have to move forward. We have to be here for Zoya because no one else can take care of her like us.’”
Sadia describes how her previously healthy six-year-old daughter woke one morning a year ago, a couple of days after having a fever, unable to speak, her body jerking. “She had been perfectly fine,” Sadia says. “The night before when I put her to bed she said: ‘Okay Mommy. Goodnight. I will see you in the morning. I love you.”
Sadia called 911 and soon they were in the emergency room. “Her whole body was twisted and shaking and I was not able to stand,” Sadia says. “I closed my eyes and collapsed on the floor.”
Zoya’s seizures began to come more frequently, some lasting several minutes. “They had to keep increasing the medication they were giving as it became less effective,” Sadia says.
The doctors had no idea why Zoya was seizing, and despite running all kinds of tests, they couldn’t find an answer. Zoya was intubated because she wasn’t getting enough oxygen during seizures and a feeding tube was placed.
With no answers and no solutions, Sadia’s father-in-law, an anesthesiologist, suggested that they try Propofol, a commonly-used anesthetic in adults. “He told them: ‘When you want to stop seizing, you have to put the brain to sleep,’” Sadia says. “The doctors said they hadn’t used it in kids and that it could cause death. But my father-in-law said if we let her continue to seize, she’s going in that direction anyway. At least we can say we tried.”
The treatment was given and drastically reduced Zoya’s seizures. However, it didn't eliminate them. “We didn’t know whether she would make it out of this,” Sadia says. For two months the parents took turns sleeping upright in a chair in the neurology observation room, while nurses worked around them on four patients.
Zoya was moved to the complex-continuing care unit at Holland Bloorview with the goal of slowly weaning her from heavy seizure medications. “The doctors can’t say what her end condition will be because she’s on so much medication,” Sadia says. “Zoya is not able to speak, but can open her eyes and look around and can move her arms and legs. They can’t say whether her [current] condition is a result of the meds or of [brain] damage,” Sadia says.
Weaning from the seizure meds is a slow process with no timetable because withdrawal seizures are a side-effect and illness can retrigger the seizures.
Sadia says it helps her to be fully involved in Zoya’s care, which includes getting up every hour during the night to suction her. “It gives me a kind of satisfaction because I know I am doing my best. Zoya can feel me here and this is part of her therapy. I talk to her.”
She relies heavily on her family. Sadia’s retired father came to Toronto from Pakistan to help care for his grandson and “has been the biggest help. Babysitters are expensive and because I had to quit my job, we couldn’t afford them.” Sadia says her father is also a wonderful sounding board on the evenings when she sleeps at home. “Sometimes I have to talk and some things I can’t discuss with my son.”
Sadia says she’s lost contact with many friends. “I can’t relate to what is going on in my old world,” she says. While friends offered support when Zoya was first hospitalized, it petered out over time. “I don’t ask for help and that’s okay because I have enough to worry about.” She said one or two friends have stuck by and she appreciates them. “They don’t expect me to be normal.”
Some of her best support has come from Zoya's school. “Her teacher visited in the ICU and her friends have sent so many cards and so much love to Zoya. They did a marathon in honour of Zoya and talked about her strength and how she is fighting this disease. Her teacher is still coming and she made me a special book with all of Zoya's school pictures and her drawings and journal entries. It is so precious to me.”
If she takes any time for herself, Sadia says she feels guilty. “I pray, and that’s the only thing that helps. We are Muslim and I have my praying mat here beside Zoya’s bed. When I pray I am talking to God and giving my burden to him. That’s the only thing that releases my burden, and makes me feel that I’m not alone.”
Sadia says she enjoys speaking with other parents on the unit. “Even though their situation may be different, in the end they are feeling the same as I am—they are feeling pain for their child.”
She says it’s important to stay focused on small signs of progress Zoya has made. “It reminds me of the ups and downs, and how we survived and had hope during the worst times. We were initially told she would be on the ventilator for the rest of her life. But one day a respiratory therapist noticed that Zoya was breathing on her own, even though she was in a coma. We were told she would never open her eyes, but she is opening her eyes. We were told she would never be able to move, but she is able to move. She is improving and I know she's trying her best to get out from this condition. My little doll is a fighter.”
Sadia says encouragement from staff gives her strength. “Without encouragement, I question whether I am doing enough, or doing the right things. I am so lucky. My experience at Holland Bloorview has been amazing. Even the cleaners, while mopping the floor, will ask how my daughter is and how I am doing. Just saying these words can make my day.”
She says it’s important for staff to remain positive, even if parents become impatient or demanding. “They need to remember that the parent doesn’t come here willingly, they’re not enjoying the situation. Parents want help. Sometimes parents become stressed and demand things. Sometimes they are out of their mind. But if they don’t get a positive response from staff that will just increase their anxiety.”
For staff that has trouble relating to what a family is going through, just taking a minute to be present and listening helps, she says. “Be there. Listen and say ‘I can hear you and I hope things become better for you.’ Encourage parents that they are doing their best and to keep doing it. This builds our strength.”
To other parents she says: “Don’t give up your hope. Stay together as a family and be there for each other. I need my family more now than I ever have. Take things day by day. Be thankful. We are so thankful that Zoya is still with us.”
