The Part No One Tells You About

Author: Kelly Mannion Ellis ’10

3 Illustration by Dante Terzigni

I hear him screaming as I walk down the hallway, my eyes cast downward. He became addicted to opioids. Now he is withdrawing. 

I enter his hospital room and fumble around the wires and lines and cables, my arms outstretched. He sweats against my isolation gown and rejects my gloved finger. The monitors — one for oxygen saturation, one for respiratory rate, one for heart rate — all sound their alarms. The beeping goes on for hours, seemingly. The crying goes on even longer. Adult and baby, crying together.

I don’t recognize my son.

This is the part no one tells you about. Pediatric hospitalization is more than IVs and yellow lights and blood tests. It is watching your baby go through withdrawal symptoms after being given narcotics to manage his pain. It is creating lists of questions only to find your voice paralyzed during morning rounds. It is well-intentioned professionals delivering poorly timed news. It is muting your friends — those who have “normal” children — on social media so your jealousy does not get the better of you. It is the realization that chronic illness is just that — chronic. It means seething silently as you hear “you’re OK” said over and over again to your crying son. He is not OK. None of this is OK.

It is guilt and noises and rage and alarms.

My recommendation for this top-tier pediatric hospital in Chicago would be to have a soundproof room with padded walls where parents can scream and hit and sob. Repeat and return to your sick child’s room without the need to explain your diverted eyes or your crossed arms. One sunny afternoon in June, our newborn was on the heart-and-lung bypass machine for 180 minutes. Two months old and without a heartbeat pumping oxygenated blood to his other organs for three hours. Nearly double the amount of time the medical team originally anticipated. What does that mean for his development? “You should read to him to counteract any adverse neurological outcomes,” the lead anesthesiologist advised us.

“Be good parents” is the advice.

I could scream. It’s not the anesthesiologist’s fault. He and his team probably did excellent work in that operating room. But I really need that soundproof room.

I buried myself in work. But every so often, while answering an email or listening in on a conference call, my mind would wander. ‘Is my son still alive?’

James is a “heart warrior.” He suffers from tetralogy of Fallot — a congenital disease comprised of four defects in the heart — along with heart-rhythm and airway issues, some of which stem from complications in his initial repair surgery. That first open-heart surgery was difficult. The second, unexpected one — to insert a pacemaker into his tiny, two-month-old body, where it will regulate his heart rhythm for the rest of his life — was unbearable. More surgeries, more waiting rooms, more bypass machines, more feeding tubes, more specialists will come. A lifelong condition. A lifelong commitment. We have become nurses and researchers and advocates and addicts and parents all at once. We move like ghosts.

Months earlier, we were told James would not make it. Additional imaging was needed, but the ultrasound technician had seen a fluid-filled sac called a cystic hygroma on the back of his neck. The hygroma itself was not a problem, but it was an indicator of either a chromosomal abnormality, a genetic disorder or a structural defect — any one or combination of which would be “incompatible with life.” We saw maternal-fetal medicine specialists, imaging professionals, genetic counselors and cardiac specialists over the next several weeks, and the conditions only got worse. By Week 20, James’ lungs, stomach and skin were filled with fluid, resulting in a serious condition called hydrops.

At every appointment during my second trimester, I was encouraged to abort our son. “Many families would choose termination under these circumstances. I am sorry.”

James. My husband is a James, as is his father. We always knew our firstborn son would carry the name. We did not utter it for months. 

I buried myself in work. But every so often, while answering an email or listening in on a conference call, my mind would wander. “Is my son still alive?”

Every night for nearly three months, after finishing work and discussing Mickey Mouse with our toddler daughter, I would climb into bed with a fetal doppler and spread UV gel across my stomach. Some nights, James’ heartbeat took me a while to find. Most nights, it was faint. But it was always there. Our son was given a   1 percent chance of making it to 20 weeks, then a 5 percent chance of making it to 40 weeks, with unknown conditions at birth if he made it that far. Hope met with fear. If he makes it, how will his condition impact our family, our lives, our careers? 

At some point well into my third trimester, James’ hydrops miraculously resolved. The exhaustive genetic testing we had done also came back clear. “There is likely still an underlying genetic cause for this fluid buildup,” we were told. “But it has never been clinically diagnosed.”

The unknown.

I didn’t talk much about the child growing inside of me during my pregnancy. I sidestepped excited questions from the dentist and the cashier, unsure how much longer I would be pregnant. At the same time, I fumed when family and friends did not ask about the baby. Conflicting and irrational and heavy feelings abounded. Words were left unsaid. I could have sworn I heard a collective gasp in the labor room as I pushed my son into this world. The emotional exhaustion of it all piled up. Carrying a baby with poor-to-fatal prenatal diagnoses harmed my mental health and my capacity to trust.

I probably should have talked to someone back then. I am still angry — indiscriminately angry.

Given what could have happened, I should be grateful. I am grateful. I thank God for the blessing of our son. I thank the surgeons and the nurses and the specialists for their care. We are some of the lucky ones, when you consider the grim prenatal statistics recited to us more than one year ago.

But I still worry.

I worry about what is lurking in his genetic makeup. I worry about the hospital lights and the narcotic exposures and the post-traumatic stress of it all. I worry about my rage and my defensiveness. I worry that my husband will not always be so forgiving when I inevitably make him a target of my anxiety, even though he, too, is suffering. I worry that my daughter will begrudge my lopsided energies. I worry that I will resent friends and colleagues who take trips with healthy kids or who achieve career milestones that once seemed attainable for me but no longer do. Above all, I worry that — when he is on his own, dealing with cardiac appointments and stresses as a grown adult — he will resent me for making a critical decision so many years ago. That he will not like his life.

But days pass, as they always do. I enter his hospital room, and he is turned away from me, facing towards the window. The sun comes over the lake. I creep over to him.

He is smiling. He holds my gaze. I recognize my son.

I’ve known him all along. James.

Kelly Mannion Ellis is an attorney in Chicago.