Sulayman's Story

Our nightmare began when Sulayman was only a week old. On Monday May 16, his right thumb appeared to be red, swollen and painful to touch, otherwise he was acting like a normal newborn, he was alert and feeding well. Concerned about his thumb, I asked my husband to take him to the local hospital to get his thumb checked out. After waiting for many hours in the ER, my husband returned at 1:30 a.m. without having Sulayman seen by a physician. He decided it would be better just to take him to a local walk-in clinic the next morning rather than waiting at the ER into the late hours of the night. At this point in time, our only concern was his right swollen thumb. The following morning, Tuesday May 17, my husband arrived at the walk-in clinic prior to them opening at 9:00 a.m., yet he was not seen until approximately 11:30 a.m., at which point the consulting physician advised that his thumb did not appear to be infected, but because Sulayman had a low grade temperature he prescribed an oral antibiotic as a precaution. It was when Sulayman returned home that day, his behavior began to change. What appeared to be strange to me was that he continued to have a fever of approximately 100-101°F, which we were controlling with Tylenol every 4-6 hours. He also appeared to be lethargic and irritable when awake.

Now on Wednesday May 18, at around noon, it had now been approximately 24 hours since Sulayman was ingesting his antibiotics and his temperature, although would come down with the Tylenol, would go up again as the Tylenol would wear off. That evening we took Sulayman to the Hospital for Sick Children in Toronto, while at the hospital his temperature had risen to 103°F.  He was top priority and was taken in to be examined right away. They performed a urine and blood test, and for the “worst case scenario” performed a lumbar puncture, in order to test for meningitis. One hour later the preliminary results were in. The ER physician came in and advised us that Sulayman had bacterial meningitis. Immediately, my eyes welled up with tears. This couldn’t be happening, this wasn’t real. He is only a week old, how could this happen to him?

What made things even more scary, was that Sulayman had a very rare form of meningitis caused by a purulent bacteria that carried a high mortality rate. It is clinically almost unheard of. Doctors were uncertain as to how he became exposed to this bacterium and believed his right swollen thumb was incidental and not a likely source of the infection. They immediately began a course of aggressive antibiotics. The doctors advised it would take at least 48 hours for the antibiotics to kick in. Those 48 hours were the worst hours of my life. He continued to have a fever which they were controlling with Tylenol. The doctors gave us no indication of optimism. I held him in my arms for those two days, with tears flowing down my eyes in succession, and all I could do was pray to God, to save him. I felt as if my chest was compressing my heart, I had never before been so mentally and physically consumed like this. And then, by God’s grace on Saturday May 21, after the first 48 hours, his temperature stabilized. He was again acting like his normal self, alert, smiling and feeding as usual. Sulayman had to undergo three weeks of antibiotics at Sick Kids, thankfully, during that time his brain scans, neurological testing, blood cultures and hearing tests, all came back normal. The doctors were pleased with his progress and recovery and we were discharged from Sick Kids on Thursday June 9.

We are truly grateful to have him with us today. Meningitis is devastating and without treatment can be fatal. For meningitis time is of the essence, early detection is critical to a good prognosis. If it is not diagnosed and treated within the first day or two of symptoms, there can be severe long term consequences in terms of brain damage and life-long disability. Initially, Sulayman’s only symptoms included a low grade fever and some irritability, which is not uncommon for any child when they are not feeling well.  If you have a child you know that children get fevers all the time, and you would never think in a million years that your child could potentially have a life-threatening disease. So please keep Sulayman’s story in mind, learn the symptoms and tell other parents that you know. Parents know their children best, and if your child’s behavior is out of the ordinary, do not hesitate and take them to be seen at a children’s hospital right away, it could mean saving their life.

Furakh Mir