Swing of the Sickle

There are many ways to dive into life in Costa Rica: adventure, travel, retirement and new business ventures, to name a few.

But even in Costa Rica, life can pull you sideways – without notice, and all the best laid plans can go awry. My family and I survived a life and death experience with the birth of my second child in Costa Rica. Although there were many obstacles and annoyances along the way, my son and I made it home with the help of fine doctors, very caring nurses, and a loving community of friends.

We now grapple with the fact that he has Down Syndrome and are learning again how to dive back into life.

Here is Addison’s story…

The pediatrician and midwife stood side by side, a few feet from my bed. I switched focus between the beige ceiling and the green sheets covering my torso and legs. They moved in unison to the bedside. “Your son is so strong,” said the midwife. “He’s really beautiful.” The pair looked at each other, and then to me. There was something more: I knew that look.

“The surgeon says it is a wait-and-see game concerning your son’s digestive condition and whether he will need surgery,” said the pediatrician. He folded his arms and the midwife clasped her hands around the steel of the bed railing. My husband stood on the opposite side.

“And,” said the midwife barely audible, “he has Down Syndrome.”

“But, it’s a very mild case,” said the pediatrician.

Years ago, I hit another car head on. Seconds before I smashed into the Datsun’s passenger door, sound ceased. Time sped into slow motion. In those seconds, I knew my life was left to physics playing out its rules.

I watched my car and my body spin along the highway, as if I sat in the third row middle seat of a theater. When the drama stopped, my senses tuned back into real-time. Cars were on fire and my body was in pain. I knew I would never be the same again.

During the pregnancy, I accepted the fact that the doctors were 90% sure my child would need surgery in the first days of life or he would die. I shelved thoughts of Down Syndrome since all the ultrasounds indicated no signs of the chromosomal defect. Full of anesthesia and pain, I knew only one thing: I had a handicapped son. We were normal no more.

My I.V., catheter, fleshy belly and I were wheeled back to a room, alone. My son, Addison, lay in a plastic box, warmed by an incubator, not by my touch. People said I was being so strong: How do you do it?

I didn’t know what else to do. I cried in spurts – on the toilet, during cuddly cat commercials, when I couldn’t reach the nurse-call button. What else do you do?

I entered into this agreement to have another child, but if questioned under bright lights, I might have said I wanted an “out” clause: Could I reconsider?

I didn’t want stitches. I didn’t want my son’s insides splayed open in the first days of life. I wanted that life – the one I used to have, before children – the one where I could sleep until noon because I watched too many movies the night before. I wanted to splurge on chocolate and wine and not fret about the consequences it could have on the psychological and biological make-up of another human being.

I narrowed it down to two choices: I could run away to a new city. Find a job at a zoo where I’d never be recognized and sell raw fish bits to tourists to fling at the seals.

“Say,” the tourists would ask while pushing their strollers filled with “normal” children.

“Weren’t you once a mother?”

“No, no.” I’ll say. “Look, I’m wearing white! My clothes are stain free! My legs are shaved, and my breasts don’t leak! You must have me confused with someone else, someone maternal. Now, was that medium or large fish chunks?

Or, I could put my head down and forge ahead, shuffle by shuffle. I walked the empty hallways of the hospital at 3:00 a.m., wheeling the I.V. along, trailing me like a shy boyfriend.

I sat next to the incubator. What do I say to someone who lived inside me, yet I’d only met for a few seconds: Hello, I’m your mother, please don’t bond with plastic or the beeping oxygen machine. To him, it must have sounded like I was speaking through a muffled megaphone. I opened the little window and touched his hand and stroked his arm. He cried and cried. The nurse told me he was hungry. My breasts could have told her that.

I searched his closed eyes for traces of Down. I just couldn’t see it or didn’t want to see it. Maybe THEY were wrong. But when awake, I hated to admit his left eye appeared more almond shaped than the right. His skin was flaccid like someone let a little bit of air out of him. I was afraid I wouldn’t know what to do with him. I feared he’d figure me out to be a fake and see through my attempts to be a mother.

“You look white,” the nurse said. She ordered a wheelchair and pushed me and my drugs back to the room. I repeated this little ritual for weeks to come. I brought my son music and tapes with my voice on it. I would stroke what little flesh I could find between tape, tubes, and monitors. I read him short stories and the newspaper. Day after day, I sat in the same orange plastic recliner, believing I made a difference.

Three days after the birth, the surgeon confirmed our son had a blockage in his digestive system. Addison could pass some fluid, but not enough to sustain life and certainly not pureed squash. At 9 p.m., I went home with my daughter. My husband returned to the hospital to hold vigil with a few friends while our son would have major surgery.

Addison’s pancreas had been wrapped around his duodenum: the little thing that connects the stomach to the colon. This little baby lay in an open air incubator; his eyes were bandaged shut because he’d developed jaundice. He baked under a yellow light; the nurses turned him like a chicken on a spit.

I had to ask permission to hold him. Nurses half my age were giving me advise on how to feed him. I knew I should be a tougher advocate, stomping through the NICU, demanding kangaroo care. But I was afraid of the tubes. I was afraid I’d pull one out of his nose or the IV out of his leg and he’d have to suffer more because of me.

He started digesting breast milk from a bag – drops, teaspoons at a time inserted through a tube in his nose which passed to his stomach. Every three hours I hooked up to a milking machine. My breasts let down milk to the whirr of a machine rather than the cries of a child. I had so much extra milk that I froze some, threw some out, gave some to the dogs, and even drank a bottle or two myself.

There was no place for me to sleep in the hospital or rest. I wandered the halls for breaks. I’d been kicked out of the Sala de Medicos, where I’d camped out because a doctor was upset I’d left my blanket on the couch, and he couldn’t eat his sandwich and watch CNN before the next cesarean.

I left my son every day at 7 p.m. I abandoned him to his box and the nurses. The refrigerator was full of expressed milk. I needed a little time with my daughter, who was suffering from panic attacks every time it rained, which it did every day.

A week after surgery, the Bili (Bilirubin) lights were turned off; the heart monitor removed; and the stitches taken out. He drank breast milk from the bottle and then moved on to the real thing. I wore a blue gown each time I entered the Neonatal unit.

I dug out my breast from under all the clothes (its freezing cold in the NICU), and I sat in the orange recliner. He ate like a calf kept away too long from his mother. I knew this scene: he looked like my daughter.

Two weeks after Addison’s birth, we’d been given the green light to take him home. My daughter and I decorated a basket full of gifts for the nurses. When we entered the NICU, the nurse was removing a thermometer from our son’s mouth, a usual occurrence – except for the look on her face: I knew that look.

“He’s got a fever,” she said. Fever meant infection. They called it neonatal sepsis. I had no idea what that meant. I had no energy to research; Google was the farthest thing from my mind. I could barely put on my shoes. We started antibiotics and waited.

A few days later, an ultrasound revealed Addison had another congenital defect: two cysts developed on his bile ducts, which were infected. “I’m sorry,” the surgeon said as she leaned stood over the incubator. “He’ll need another surgery. But that can wait until he’s stronger, maybe when he’s four months old.”

“Can’t we give him the antibiotic orally? I’ll hire a nurse,” I said. I’d dance in a grass skirt; streak around the hospital; shave my head, anything to go home. Our doctor agreed. The next day, our son would be discharged.

It rained hard on the eve of Addison’s homecoming. “Is it going to storm?” my daughter asked.

“No,” I said pulling the cover over her shoulders. “It’s just a good rain.”

“Are you going to be an angel when you die?” she asked.

“Yes,” I said, unsure of the right thing to say. She cried even harder.

“Tommy told me that when we die, we turn into fog and can’t see anything,” she said. “How will you see me if you turn into fog?”

“I’ll see you forever,” I said, hoping I’d chosen the right words. “I’ll be with you always.” My daughter whimpered and became quite. She was becoming aware of death. I was too.

I dressed the morning of our son’s second homecoming with tidbits of joy popping around in my head. I looked so unlike myself. My face was bloated like a pumpkin with carved circles under the eyes. I wore a mismatch of maternity clothes. But, I could bear one more day, as long as it was the last.

The nurses ordered a wheelchair. “Please have an orderly wheel me out,” I said to the nurse in Spanish. “My husband can’t steer and runs into walls.”

Addison slept cocooned in a blanket in the crook of my arm. My daughter held my hand and marched next to me. My husband carried the flowers, blankets, and baby clothes. I felt like a contestant in a beauty pageant who’d arrived late. The crowds had gone home. The balloons had popped.

When the automatic doors opened, I wanted to raise my hands, victorious in a twelve-round-knock-out fight. I waved to the waiter at the restaurant, who’d seen me almost every day for a month. They took the wheelchair away.

“Come on mommy!” my daughter said, already strapped into her car seat. I stood alone, for the first time, with my son, far away from the incubator and the florescent lights.

Pregnancy, the advent of a new life, carries with it the chance of death. Pretty parenting magazines and fuzzy stuffed animals and matching dust ruffles divert our attention from the fact that death is a risk with every birth.

This time our little kingdom was spared; we were a few moves ahead in the chess game of death. Luck, chance, karma, technology, compassion, whatever it was, sent the man with the sickle packing, at least for now.

I grimaced getting into our car. My daughter noticed the drops on the windshield

“Is it going to rain?” she asked.

“It was Costa Rica,” I said, “It has to rain.” My daughter sucked on her fingers and fought back tears. Like four little bats fleeing hell, we drove into the rain. Addison stared at me with his almond eyes: I knew that look.

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Written by Susan Carmichael, who is a freelance writer living in Costa Rica. She has developed several education curriculums for children and adults. She has also taught journalism. Susan’s website is Mother Jungle, she has produced and hosted radio programs and documentaries in Costa Rica including a short story program called “In the Moment” and an hour long interview program focused on the issues of women called “A Womans Voice”.

Personal note from Scott Oliver, Founder of WeLoveCostaRica.com – Those of you who have been with us for a few years may remember reading some of the 27 articles written by Susan before life pulled her “sideways” however, I for one am thrilled to have her wonderful writing back on WeLoveCostaRica.com and wish her all the best in the world.

Should you wish to contact Susan yourself, please email her here.

Andrew Makarik

to@welovecostarica.com

Andrew Makarik is the main editor of WeLoveCostaRica, a fan of this sunny country. He is also a loving husband and a has a lovely daughter. By being a devoted family man and the biggest Costa Rica fan, he wants to make more people feel at home there. WeLoveCostaRica unites people and helps them find new home or a new travel destination. This website is a friendly community where everyone can find not only information, but also new friends and travel pals. Andrew is also passionate about IT and programming, so he himself maintains a friendly atmosphere in this cozy environment of WeLoveCostaRica.com.