My son was born healthy, happy and perfectly pink. Three days later, he was fighting for his life

My son was born healthy, happy and perfectly pink. Three days later, he was fighting for his life

Photograph by Michael Alberstat

On September 30, 2017, I gave birth to my son, Manning. He was born five weeks premature but healthy, with perfect pink colouring and a head full of beautiful brown curls, just like my husband, Jeff. As the nurses wrapped him with towels, he started to cry—a robust, reassuring wail that continued until he was comfortably bundled and back in my arms. He had no problem latching or breastfeeding. He was perfect. Our five-year-old daughter, Regan, came to the hospital that day to meet her new baby brother.

A few days later, Manning’s skin was ashen. When the nurses pressed their thumbs against his skin, his colouring did not return as quickly as it should. A lumbar test confirmed he had meningitis, which can cause cerebral palsy, blindness, deafness, learning deficiencies, even death. Within hours, an ambulance arrived at our local hospital in Peterborough and took him to SickKids, where he was sequestered in an isolation room and administered antibiotics. But he kept getting worse. The physicians were perplexed—and they started to believe that his meningitis was caused by a virus, not bacteria. Whatever Manning had contracted was attacking all of his vital organs. Scar tissue had built up on one side of his heart, which wasn’t functioning at all, while the other side was pumping at just five per cent capacity. An MRI showed that he had severe brain hemorrhaging. After a few days of blood work, SickKids confirmed that Manning had enteroviral sepsis: an infection that spreads in the blood and often causes meningitis. They believed that he’d contracted it during delivery.

Five days after Manning was admitted to SickKids, the doctor told us our child was the sickest baby in the NICU. If we wanted to get him baptized, he said, we should do it soon, because he was unsure if Manning would survive the night. My world shattered. Throughout my life, I’d always been in control. I learned that’s not possible when you have a sick child. There was nothing I could do to make things better for our son. The best doctors in Ontario were doing their best to save Manning, and even they did not have answers to our questions. My husband was incredibly strong through all of this. I relied on him for encouragement, to make me believe that tomorrow would be better.

For the next few weeks, Jeff and I lived at SickKids in the Ronald McDonald Family Room, a private area with a kitchenette, laundry, a shower and recliners, designed to help parents like us stay overnight so they can be close to their sick kids. I seesawed between sorrow, anger and desperation. Every morning, I’d wake up before sunrise to pump, take a shower and let myself fall apart before I had to pull myself back together. I did a lot of crying and praying in that shower. Sometimes I had to muffle my sobs in a towel so no one could hear me. Then Jeff and I would rush to Manning’s ward to attend the morning rounds, where we could hear updates on his condition. When we got hungry, we ate. When we got tired, we drank coffee. The rest of the time, we were at Manning’s bedside.

The doctors discontinued Manning’s antibiotics, and instead administered morphine and muscle relaxants so he could sleep and reserve his energy. Machines and feeding tubes took care of his eating and breathing. All I could do was stand by his bedside, holding his tiny motionless fingers, wanting so badly to cradle him in my arms and feel his warmth. I didn’t even recognize my son. Fluid buildup had caused him to swell so much that his neck disappeared and his body doubled in size. Our newborn was covered in tubes and wires, his brown curls had been shaved, and there were sensors covering every millimetre of his head. I kept a lock of his hair and prayed that it wouldn’t be all I had left of my son.

There is no standard treatment for enteroviral sepsis, but the doctor told us about a new experimental trial drug in the States called pocapavir, which might inhibit the virus. He explained that the drug was too new for them to know if there were negative side effects, but that we needed to make the decision right away. My husband asked the doctor what he would do if he were in our situation. He said he’d do everything to save his child. That day, Manning started a course of the trial drug. As I watched from the sidelines, one thought repeated itself over and over in my mind: will my son be here tomorrow?

We didn’t know for sure whether the pocapavir was working, but slowly, as the weeks passed, Manning’s health improved. He was transferred to a room with other babies, and his echo­cardiograms showed slow but certain progress. On October 26, nearly a month after his birth, Manning’s condition was stable enough that the nurse was willing to let me hold him for the first time since he’d become sick. It was as exciting as it was stressful. The nurse removed my son from the incubator, careful not to detach any of the wires or tubes. Every time I’d flinch or move, no matter how delicate I was, the monitoring machine would start beeping. I didn’t care. I treasured every second that I got to hold my son.

Despite Manning’s improvement, his future looked grim. His severe hemorrhaging might have caused brain damage, and at the end of October, we learned that the semi-functional side of his heart was starting to decline. The transplant team told us they would not consider listing Manning to be an organ recipient because he was too weak to survive the procedure. It sounds crazy, but I begged the doctors to give Manning my heart. I considered selling our belongings to buy him a heart overseas. I haggled for his life with the doctors, the nurses, even God.

And then, a few days later, we got the news we’d been waiting for: a new echocardiogram showed that Manning’s heart function was improving. He was weaned off of his breathing machines, heart monitors and feeding tubes. New MRI results showed that the blood in his brain was being reabsorbed into his body. The pink returned to his cheeks, and his hands and feet warmed up—a sign that his heart was pumping properly. Over time, we got to hold our baby boy for longer stretches. He also showed cognitive improvement: he was constantly looking around and responding to sounds. He was a curious little boy who reacted to stimuli and loved interacting with whoever was holding him. And then one day, the doctors told us the virus was gone. They didn’t know if it was the result of the trial drug or just his body’s natural defences. It didn’t matter to us.

On December 18, Manning was discharged from SickKids and moved to Ronald McDonald House next door, where his condition could be monitored. For the next three months, day by day, his health got better. He took milrinone, a drug that helps his heart pump and relaxes blood vessels to help them dilate. Many other residents at the Ronald McDonald House didn’t even realize he was sick. As he got older, he started to develop his own personality: he’s a laid-back, easygoing little man, just like his dad. He hardly ever cried and had an infectious smile. By the middle of March, the doctors told us that Manning’s heart was pumping at 40 per cent capacity. After six months of despair and uncertainty, our son was ready to come home. We were overwhelmed with gratitude for the team at SickKids, who treated our baby with kindness, empathy and diligence, and for Ronald McDonald House, which gave our family a home away from home while our child was sick.

On March 15, Manning came home to our house in Peterborough for the first time. He spent his first night in his own crib and quickly adjusted to his new life at home. So did we, with a little disbelief. Our son came home from the hospital without even a Band-Aid. We have no idea if he’ll ever recover completely, or if he’ll end up needing a heart transplant down the road. A part of me will always be waiting for something terrible to happen. And yet I’m determined to live my life and enjoy what I have now. On our latest visit to SickKids, they told us Manning is hitting every milestone expected of a baby his age. He has surpassed all of our expectations.

Jennifer Anderson is a public health program manager in Peterborough.

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