Category Archives: double aortic arch

Laid in Arms

hospitalDavid, Sammi and I slid into the hospital the morning of her first surgery the way a reluctant toddler comes down a slide. All sorts of practicalities handled, bags packed for a hospital stay, all that remained was the hour of waiting in a room with a baby we might never see again.

If that sounds maudlin, that’s because it was. The risk to this surgery was smaller than most cardiac surgeries, but there is always a risk to surgery. The doctors would slice into my smooth, perfect, luscious baby’s back, pull her ribs apart, and decide which branch of her aorta to clamp and remove. The very thought of it made me weak. And yet, my job was to hand her over to these doctors who didn’t know anything about who she really was. They didn’t know she could sing. They didn’t know how much her four year old sister adored her. They didn’t know about my ambivalence about her for the first months of her life, ambivalence that I worried would make the universe believe that I didn’t want her, after all, and maybe it would take her away from us to punish me for it.

We passed Sammi around the pre-operative room — David and I, his mother, his sister, and her husband. After I refused to give her to a strange doctor to take away, screaming for me, they gave her a shot of Versed, an anti-anxiety drug that made her loopy and cross-eyed. When the anesthesiologist came to take her away, she waved at me as she was carried down the hall in his arms.

Once she was out of sight, I fell sobbing into the arms of my sister-in-law. She and I had never been close, but sometimes, the right person at the right time becomes a lighthouse. She was solid and soft at the same time. I think I fell on her because she was the very nearest person, and all my hold-it-together just dissolved once Sammi was truly and in every way out of my hands.

The details of the day — the waiting, the surprise visit with pastries from David’s aunt, the moment when the surgeon came to tell us that everything went well — these are the uninteresting snapshots of someone else’s life, the ones we look at politely but cannot connect to our own. The universal is in the humanity of kind people when you need it the most. That hug. Those pastries. David’s hand on my shoulder when we learned that they were closing her incision, and my memory flash of his hand on my shoulder as Sammi had been born, with me flayed on an operating table, paralyzed, unable to help her. She’d lived through that. She would live through this.

I couldn’t do anything to keep Sammi alive except to go and find the people who knew how, and to lay her in their arms.

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The Longest Nights

“Don’t let her get too worked-up.”

By the time Sammi was 13 months old, we’d had five straight months without her getting terribly sick, enough time for me to catch glimpses of sweetness in her. I had started, haltingly, to fall in love with her, resentment cracking with every three hour stretch of sleep. Whenever I left the room and came back, she would hold her arms up to be held, and then pat my back and say “mama.” It was the stuff of syrupy mommyblogs and Hallmark cards; she was tiny but proportionate and round-cheeked, with a fluff of reddish blond hair, big brown eyes, and smooth fair skin. Life had become almost tolerable that summer before her first birthday — I’d begun working again, a few hours a week as a freelancer, and we spent time outdoors every day. The sun was coming out, metaphorically, and then she got a cold, and all the clouds rolled in fiercely from every corner of the sky.

“Don’t let her get too worked-up.”

These were the words we were given by the cardiothoracic surgeon in the one meeting we had with him before he operated on Sammi.

That fateful cold in August of 2006, the one that set off another hospital stay and a visit with the otolaryngologist, ended in a bronchoscopy under general anesthesia and the diagnosis of double aortic arch, confirmed with a CT scan, also delivered under general anesthesia a few days later. Surgery was scheduled for October 12. We had three and a half weeks in which the orders were to stop all solid food feedings — just nursing and milk — and not let her get “too worked up.” We asked the pediatrician what that meant, and she did not mince words. “You do what you have to just to keep her calm, mom. Bring her to bed with you if that helps. Just keep her calm.”

We didn’t learn until later that rises in blood pressure could strangle her from the inside.

nightcar“Don’t let her get too worked-up.”

Sammi didn’t like sleeping in our bed. The August respiratory infection never quite resolved, and her stomach was wrecked after the antibiotics. She woke often. David and I split the nights into five-hour shifts; one of us would be responsible for all things she needed between 10pm and 3am, and the other person would take her from 3am to 8am. Most nights, that meant that one of us would spend that second shift driving around the suburbs with her dozing in her car seat, her favorite music on repeat through the car speakers. It kept her from crying, allowed her to sleep, and required nothing more of us than maintaining the movement of the car.

We went through all-night drive-thru windows for Sprite and waited until she was deeply asleep to switch to talk radio for the company. Even now, nearly nine years later, when we drive certain stretches of road, one of us will remember the way it looks at 4am in the fall. Even now, we remember that time as the nightmare it was: keep driving or the baby will cry. Keep driving or the baby will strangle herself from the inside with her own aorta.

“Don’t let her get too worked-up.”

We held our breath and drove, and we kept her alive.

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Pocketing

Once we knew what a double aortic arch was, and that Sammi had one, all sorts of mysteries were solved at once. We now understood the mystery of the unresolved loud breathing, which was the scariest of all, but we also understood something far more insidious: we realized why Sammi didn’t eat.

She was over a year when the diagnosis came. As we had with her sister, we first offered her liquidy purees that I made, from scratch, when she was about six months old. Ronni’s immediate joy at the discovery of food at that age was a stark, stark contrast to Sammi’s total disinterest. Where Ronni’s legs had swung below her seat when she saw her special little bowl and spoon coming nearer, Sammi would look away, eyes distant, and only occasionally grace us with the tiniest “o” of an opening.

Into that tiny “o,” she would allow only miniscule flecks of food — barely the hint of food, really — into the inside of her lips. The first foods we offered — oat cereal mixed with breastmilk — resulted in my very first front-row seat to projectile vomiting. She seemed unfazed by it, though, so we tried again, and again, until her new pediatrician (by 6 months we had ditched the patronizing seen-it-all man for a female pediatrician we would grow to love like family) told us to stay away from grains for Sammi for a good six months.

Thus began a totally puzzling game of “why doesn’t she like this food?” My mashed and cooked apples, pears, peaches, and sweet potato didn’t make her vomit, but she didn’t like them, either. Mashed peas and carrots and green beans weren’t any better. We went on and on through the list of foods, and still, the tiny “o,” the thrusting-tongue refusing to swallow, the disinterest. We were told to keep on trying, keep on offering, maybe-if-she-eats-she’ll-sleep-better.

Then, like a slap in the face, we discovered that Sammi would happily eat many foods so long as they were jarred, stage-1 baby food — not my homemade food. At a last-minute outing without any food for her on hand, I ran into a grocery store and bought an emergency jar. To my surprise, she ate half of it in one sitting.

I quit making baby food. There was no point.

blueberriesWhen it was time for her to try feeding herself, we made tiny chunks of everything we’d tried before, and nothing worked. Once again, it was a maddening exercise in preparing food and throwing it away, preparing it and throwing it away, over and over, like Sisyphus pushing the same pot of soft-cooked pears up a hill every day until the end of time. When she finally landed on two foods she would deign to put in her mouth on her own, they were blueberries and freeze-dried corn. The corn, totally dry and designed to simply melt in your mouth, was awful to my adult palette, and even an entire bag of it — which would take her two weeks to finish — measured up to less than 50 calories. The blueberries weren’t much denser, but she seemed interested, at least, and so I clung to that, cutting blueberries into quarters and keeping track of her intake each day.

One day, when she was nearly 11 months old, she was crawling on the living room floor in the late afternoon, when I noticed that she had something black sticking to her lip. I looked closely, and it was a blueberry, poking out of her mouth. She’d last eaten blueberries hours before. I looked into her mouth, and a half a blueberry was pocketed there, in the space between her gums and her cheek.

I checked the next day, and it happened again.

I called the pediatrician. “She’s pocketing food in her cheeks,” I said, “isn’t that weird? Shouldn’t she be chewing and swallowing it by now?”

“Hang in there, mom,” she answered. “Give it a little more time. Check back with me next month. Some babies take longer to get into food.”

I grew to hate feeding her. Every meal she didn’t eat was a night time nursing session I knew I’d have to live through, and though she was growing, meeting developmental milestones, and charming the world around her, sometimes I found myself in the kitchen, facing her high chair, and saying angrily, “No?! Not this either? No good, again?!”

I felt like a monster. Surely, this was a phase; babies go through phases, children go through phases, I would not be having this fight forever. She’ll eat normally.

She pocketed the food while I tried to pocket my frustration. Only one of us was successful.

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A Cold, Clinical Interlude

What is a double aortic arch?

double aortic arch

Diagram of a double aortic arch, courtesy of Medline.com

 

In a person with normal cardiac anatomy, the aorta (which is our body’s main artery) comes up out of heart toward the person’s back, travels down the chest parallel to the esophagus, and branches off into smaller arteries below. In a person with a double aortic arch, the aorta is shaped less like a simple tube and more like a tube with a ring at the top. In fact, a double aortic arch is just one variety of a group of congenital heart conditions called “vascular rings.”

If you look at the image above (borrowed from Penn Medicine), you can see that the “ring” created by the double aortic arch fits like a rubber band around both the trachea (through which we breathe, connecting the mouth and nose to the lungs) and the esophagus (through which food travels from the mouth to the stomach). As a person with this kind of utterly impractical anatomy grows, that ring may not.

With a band around your trachea, breathing is difficult.

With a band around your esophagus, eating is difficult.

This was the diagnosis Sammi received at 13 months old, with an order for surgery as soon as possible.

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