Life changed for Shanielle Small three years ago when she gave birth to her daughter. Naturally, she went from a life solely focused on herself, to one where her daughter Kamya became her entire world, and she welcomed the change.
Like most mothers of newborns, she looked forward to charting the milestones and watching her daughter grow as time passed – as it seemed to do quite quickly. Before she knew it her daughter was two years old.
“She was born normal. But in January 2012 she had a seizure, which caused her to aspirate and caused her to be in the intensive care unit (ICU) for two weeks,” her mother said. “She had never had a seizure before and her lungs collapsed because of the aspiration. But she recovered amazingly well, and they didn’t see any side effects of the illness or anything.”
After Shanielle took Kamya home, she found herself a little angst-ridden and concerned about it.
“I was concerned about it happening again. Because the seizure happened when she was eating, the hospital thought she had choked and treated it as choking. They didn’t think it would ever happen again,” Shanielle said.
But while she had two months without any incidents, Kamya wasn’t out of the woods.
“In March 2012 it happened again, and this time her heart stopped or she had cardiac arrest for 20 minutes,” Shanielle said. “I didn’t know what that meant, they told me as long as her heart starts back she would be fine. Because of the long time with her heart stopping – obviously there is no oxygen going to her brain – they told me she would have severe brain damage.”
What that also meant for Kamya was a three-month stay in the ICU.
“Basically everything that could go wrong did. They [the doctors] didn’t know if she was going to live. Then her lungs collapsed, and [there was] a problem with her kidneys. They weren’t sure if she was going to eat on her own. But she was hooked up to all the life support and tubes. They eventually told me that she’s not ever going to do anything again. I still kept hope that she would come around.”
During that time, the doctors also induced a coma for a few weeks.
“After she woke up, she wasn’t responsive at all, so when I saw that I said something is definitely wrong,” Shanielle said. “Then after she woke up she went back to sleep and slept for a week. They were feeding her through tubes. During that they called me and her father in a room and I think they were trying to prepare us for the worst. But then after a week she woke up and every day she started to make little movements, so that gave me hope.”
It took about three months before Kamya was able to leave the hospital.
“That was when it really hit me, the situation with my child. She couldn’t talk anymore, obviously not walking anymore. Everything had stopped,” Shanielle said. “During the hospital stay I was dealing with it, but I was so devastated. It felt like she had died because the old her wasn’t there and she was like a baby again.”
Shanielle admitted that she was scared to feed Kamya because she didn’t want the seizures or the aspiration happening again. She became incredibly protective of her daughter, not wanting people to be touching her.
In that period, Shanielle got comfort and support from her mother and extended family. Unfortunately, her relationship with Kamya’s father didn’t survive the stress of all that was going on.
“During everything we broke up because of the stress of everything and other issues,” she said. “He wasn’t able to look at her for a while to face or deal with her. Now that she’s talking he’s starting to come around. I think I handled it better than him.”
“But now she’s talking, and stepping and everything is gradually coming back,” her mother said. “It’s so amazing.”
Shanielle said the hospital told her that Kamya had a seizure disorder, “where her whole body would stiffen up and her eyes would glaze over”, she said. “But it wasn’t epilepsy.”
Finding some sense of normalcy out of the whole situation wasn’t easy for Shanielle but she tried to find moments of peace.
“For me things didn’t settle down until I took her to the Sunshine Early Stimulation Centre,” she said. “I didn’t know anything about the school, but when I took her and spoke to some of the aunties, that was when I started to settle down.”
Kamya, who has been in the school since September is now talking, making sentences. She is walking and getting physical therapy and occupational therapy.
“I just had this picture in my head that she would be in a bed and not doing anything,” Shanielle said. “Now I’m, like, she’s going to do everything again if it takes two or three years, but she will.”
Along with a growing faith in God, Shanielle said that the past three years have taught her so much.
“Before this I never thought that I’d be able to handle something like this, but I’m actually getting through it,” she said. “It has brought me closer to God and believing in miracles.”
