Thursday
Jul012010

Hayden's Story

First time parents come to grips with an unexpected outcome and take a hard look at their human response.

September 4, 2001 3:09 am

Jonathan Hayden Hoffman is born by emergency c-section.

It is the best feeling in the world when they lift the baby out, like taking off ski boots at the end of a long day.

“Thank you, that feels great!” I gasp, able to breathe, sure I could hop off the table and right into my size 2 jeans now, plop my babe into a jogging stroller and do a victory lap around the hospital.

But something is wrong. The room is too quiet and I immediately look to my husband, his face white, framed in blue paper mask and cap.

“So, honey,” I say, breaking the stillness, “who does he look like? Lot of hair, not a lot of hair?”

No answer. I hear muffled, terse voices in the far corner of the room but I can’t see past the blue surgical screen.

“Honey? Don’t worry about him not crying. This happens all the time on the Discovery Channel. It’s the c-section, but they’ll suction him; it’s fine. Who does he look like? A lot of hair, not a lot of hair?”

J finally turns to me and says with a mixture of sympathy, annoyance and fear, “He’s not even in the room anymore.”

After that, I shut up. I don’t protest when Dr. Kramer explains that the baby has gone to the NICU, that we will be taken to a recovery room.

“Just hold on a minute,” my husband says in the voice of the Indignant Consumer as he follows my bed down the hall. “I’d like someone to explain some things to us. I’d like to see our baby.”

I have only one sensation—something is missing. It is, of course, someone.

When Dr. Kramer comes in, I catch bits of what he is saying. I hear, “unable to breathe without assistance”, “zero APGAR”, “intubated”, “plastic surgery”, “facial deformity” and “cleft”. I sob hysterically, can’t catch my breath, tasting my tears as they run into my mouth.

A curly-haired neonatologist, Dr. Bad News, tells us our son is ‘massively deformed’, an undeveloped jaw, a flattened nose, that he has a cleft lip and palate ‘this big’ and holds her fingers further apart than I think any baby’s whole mouth can be.

“What about him not breathing, before they got the breathing tube in?” I choke.

She confirms my deeper fear; not only is my child deformed, he will be brain damaged as well. She says “Months in the hospital, years of special therapists. Never normal.” I still don’t look at J, but I can feel him taking each word of hers like a physical blow beside me. I am having what we call a Mattress Moment for my husband, where I want to be a buffer between him and the world, taking it all in my super-absorbent springs.

Perhaps this doctor was talking prematurely about the associated syndromes that often hitch a ride with Pierre Robin Syndrome without knowing if our child had either for sure. Maybe she had some noble but misguided notion about preparing us for the worst, or perhaps she simply enjoyed watching new parents’ dreams of their perfect baby die. Regardless, we never saw her again.

Dr. Kramer returns with an out-of-focus Polaroid, the Worst Photo Ever. “Here’s your beautiful baby!” he bellows. I take one look and burst into tears again. This chinless yellowed guppy, this turtle child covered in wires and tubes and smears of blood, this circus baby is not my son. I place a hand on my belly. I want him back inside, I want it to be BEFORE, when everything was possible.

J curls up on a chair by the window, the forgotten, grieving father. I ring for my nurse; she says I should get some rest.

“I won’t be able to sleep until I see him.” It is an apology, a fact.

She explains that my bed is too wide to fit through the door of the NICU, and he is attached to a ventilator that is far from the window.

“How about a wheelchair?”

“With the loss of blood, you would pass out if you sat up.”

“You could strap me in, wrap ace bandages or duct tape around my chest just in case.”

No dice. She suggests I get some rest.

She leaves, turns out the lights, and we are alone. It is still dark outside our windows, an emotional darkness settling over us like a heavy blanket of grief. I know J isn’t asleep; he is in that fake, ‘I’m shutting out the world’ sleep. Later, I will see our son emulate this every time a nurse comes to suction his lungs, and my heart will lurch with pride and recognition.

But I can’t let him have that escape, desperately rehash everything we have heard.

“Dr. Kramer only said cleft palate, I think, not cleft lip. And what did Dr. Bad News mean, flattened nose? All babies who get stuck in the birth canal have a flat nose.” I flick on my light and peer at the blurred, overexposed Polaroid again. The tubes obstruct most of his face; it is impossible to tell what he looks like. The vulnerable ribcage tugs at my heart, and I cling to this, a hint of something maternal. “Honey, in the delivery room, I might have heard him make a tiny cry.”

“Chandra,” J never calls me by my first name. He continues, gently, “You really need to rest.”

I am going to hang myself from the IV pole if another person suggests this.

I ring the nurse again, ask when she thinks I can see my baby. I am afraid it is bad; am anxious to prepare myself.

“Maybe in another eight hours or so, when they come to transport him to Childrens Hospital. Try and get some rest.”

When the light outside our window has gone from black to watery gray, Dr. Kramer says J can see our son now. My husband looks like he is being lead to his execution; I am so jealous.

A few weeks later, alone in our dark bedroom, J places my hands on his bare chest, wraps his fingers around mine, and tells me in a strangled voice about that first morning, when he went to see the baby.

“I was standing there at Hayden’s bedside, and I was so scared, because every inch of him had a needle or a tube or an electrode attached to it, and I froze. But Dr. Kramer took my hands in his and placed them on Hayden and said, ‘There he is, touch your son’ and everything became clear. I didn’t care if I ever saw the ocean or even the outside of that building again. I knew what the rest of my life was about.”

I watch the clock. We hear our son has extubated himself, that they are working hard to get the tube back in. We cling to his feistiness, ‘Our son is a fighter’ we tell each other. It is noon before I see the isolette nudging though the curtain by my doorway. My first assumption is that the man wheeling it is an EMT—but it is Dr. Casey, neonatology fellow at Childrens Hospital of Philadelphia, who will become our most important link in the chain. I have no idea that this kind man with sweat at his temples from the ‘hardest intubation of his career’ will spend patient hours explaining every procedure, option and medication, acknowledging every mistake. He will be one of the few doctors who calls Hayden by his name, who touches him in a non-clinical way. To this day I have racy dreams about the wonderful-but-married Dr. Casey, perhaps the Freudian way for me to try to say again, thank you.

There, wheeling close to my bed with Dr. Casey at the helm, is a plastic box with my baby inside. I can’t sit up, can’t get my hand far enough in through the hole in the isolette. We make brief contact, fingertips to fingertips. It is completely unsatisfying, and Dr. Casey apologizes, says they have to go.

Primitive alarms are going off in my head, they’ve taken your baby! It takes every scrap of social constraint that I have not to keen and pull at my hair, not to crawl, like a bedraggled mother dog, the twenty-nine miles from my hospital to his, to see him, hold him. I want to know how bad it is, whether or not I should get attached.

On my second night alone in the hospital, my nurse is a no-nonsense type with a halo perm and owl glasses. While turning me, she listens to my fears about parenting a baby with ‘special needs’. I can barely choke out the phrase.

“I can’t do it,” I tell her. “Aesthetics are very important to me.” I haven’t let J tell people anything but breathing problems, am terrified of the clumpy-mascara gossips in their SUVs spreading the bad news: the Hoffman’s deformed baby.

My nurse flips me roughly, tells me not to be a fool. “I’m recommending you for early discharge. Go be a mother. Take two painkillers before you check out, and use the wheelchairs.”

At CHOP, J wheels me through the atrium to receive my red ID bracelet, the ‘Red Badges of Courage’ we call them, giving parents access to the NICU and a discount in the cafeteria. Mine will grow mold, the leaves will turn, the planes will crash into the World Trade Center and America will go to war before it is time to cut it off and place it in Hayden’s baby box.

Mother and Child Reunion, 2001In the NICU, there are four bays, eight babies in each. When I see Hayden for the first time there is not, I am ashamed to say, immediate recognition. I feel sorry for this fuzzy-haired baby, but I don’t identify him as mine. My eyes wander to the other babies, as though I am at the deli counter, as though I have a choice here. I lean in over the side of Hayden’s isolette, smelling hospital adhesive, plastic tubing. I remember a friend saying she had to bathe her son right after picking him up from daycare because he didn’t smell like hers. I completely understand.

Although Hayden is only wearing a diaper under the warmer, he is covered in electrodes and wires, three IV inserts, one in his scalp, even, and the lower half of his face is obstructed by the straining white tape keeping the breathing and feeding tubes in place, rashes blooming up his cheeks. It hurts to look at him. I stroke a patch of twiggy thigh.

“You want to hold him?” Hayden’s nurse asks and my eyes fill with tears.

“She never has,” J explains.

It is a long process, moving me to a rocking chair, getting pillows, disconnecting Hayden from his tubing, and then reconnecting him on the other side, untying the baby restraints that keep him from extubating himself again. When the nurse brings him to my empty arms, she pins the jumbled tubing of his respirator to my chest like a corsage. I hold him gingerly, an open crepe, careful not to jostle anything. Suddenly, I am overcome with extreme sleepiness. I feel liquid and leaden, terrified I will drop him. I call for the nurse to take him back. Nothing is what I thought it would be.

Four days later, on the eve of September 11th, Hayden goes in for his first surgery and a routine pre-op broncoscopy goes wrong, puncturing his esophagus, infecting his heart and lungs. We are taken into a small closet, away from the other parents, and told he will either make it to the end of the week, or he won’t. J turns to me, and says very gently, “You know, he may not be ours to keep.”

I feel the bottom drop out from under me, spiral down into a place where there is nothing but fear. Finally, six days of blindsided ambivalence and percocet haze are sandblasted off me by terror. I want that baby to live, to be my son, with a fierceness unmatched.

Fortunately, we were right—our son is a fighter. Hayden survived, went on to endure multiple operations and infections, years of speech and physical therapy. At eighteen months, he signed his first sentence: 'all done, Hayden, 2002baby, trash' when offered his pacifier after an operation. At two and a half, he learned to swim. At four, he wore a three piece suit, climbed on the block behind a podium and leaned into a microphone to speak on the meaning of family to a conference crowd of over a hundred people. At six, he played a piano tribute to his beloved grandmother in front of five hundred classical musicians--his feet, in little red Keens, dangled from the piano bench. At eight, he beamed his crooked smile up at us during an interview on the jumbo tron after his second shut-out hockey game on Flyers ice.Dream come true! Hayden's shut out on Flyers ice

 

 

Though Hayden is on the small side and is followed regularly by an excellent team of specialists at CHOP, if you met us today, the only ways you might know about his history are the silvery scars on his chin, the frequency with which we kiss him. You might wonder at the way J and I sometimes hover, the tears that well up at something as simple as watching Hayden as goalie at the bottom of his hockey teammate pile after a game. Every day we cherish him and the lessons that his unexpected arrival taught us.

 

Birthday boys Hayden and Max, 10 and 7 * *** * 

BIO: Chandra Hoffman has been an adoption coordinator, a Romanian relief worker, a horse trainer and a wedding planner. Mother to Hayden, Max and Piper, her first novel CHOSEN was published by HarperCollins August 2010.

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Reader Comments (1)

what an incredible essay, homage, history, story...i was on the edge of my seat. i am honored to have taken a glimpse inside your heart and mind and to know and learn about hayden...can't wait to meet him!

April 27, 2013 | Unregistered Commenterwendy green

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