My Name is Not Mom

not momFirst and foremost, I want pediatric doctors who are smart, brave, and skilled enough to keep my children alive.

Secondly, I want pediatric doctors who will not frighten or dismiss my children.

Thirdly — and isn’t it always at best thirdly, where I come in? — I want pediatric doctors who can see me and the other adults around my child as valuable pieces of the puzzle they need to assemble in order to accomplish the main goal (see “first and foremost” above). There was never a chance that I would take either of my daughters to see a doctor who didn’t qualify for my first criterion, and if there were multiple options that fell into that category, I’d make the decision based on the best qualified in my second criterion.

I largely gave up trying to fulfill the third.

In fact, over the years, I stopped bothering to even tell pediatric doctors my name. They almost never remembered it. Every phone call from a physician began, “Hello? I’m looking for the parent of Samara Lewis?” When I said, “This is Debi,” invariably the answer would be “Are you a parent?” Even voicemails or messages I left with advanced practice nurses — the gatekeepers of the medical specialty physicians — in which I would leave my name would be returned with that same lack of regard for my individuality. I was “the parent of Samara Lewis” or, even worse, doctors and nurses would simply call me “mom.”

“Well now, mom, don’t you worry. We’ll see her in our clinic this afternoon.”

You know, mom, sometimes babies cry and we don’t know why.

“Is this mom? Nice to meet you. I’m Dr. Susan Smith, and I’ll be doing the anesthesia today.”

Despite the multiple scrawls all over every chart Sammi had in every doctor’s office, apparently there was nowhere for anyone to write my name. I fantasized about wearing a name tag: “Hello, my name is NOT MOM.”

Every so often, I’d be graced with a “Mrs. Lewis,” but no doctor ever looked me in the eye and said, “Debi, you spend every minute of every day with this baby. What do you think?”

The beginning of the final path, the one that led to the first big cardiac diagnosis, came in the fall of 2006. A friend had been visiting with her baby, who had been oozing green snot and gave Sammi a cold which had landed her in the hospital. Our pediatrician — a wonderful doctor who has still never, to this day, called me anything but “mom” — suggested we take Sammi back to see the otolaryngologist who had diagnosed her at 6 weeks with laryngomalacia. Freshly home from the hospital, I called that practice and waited on hold, nursing a dozing Sammi in my lap.

When I got the advanced practice nurse on the phone, I explained the story to that point: diagnosed with laryngomalacia at 6 weeks, multiple hospitalizations for respiratory infections, low oxygen saturation, chest retractions, very tiny for her age, wet-sounding breathing, and me feeling nervous and suspicious about her age and her reactions to colds.

“Sorry, mom,” she said, “we can’t really get her in to see anyone until November.”

“November?,” I asked, shifting Sammi up to my shoulder to burp her, “That’s two months away! That’s really the soonest?”

“Yes,” she said, “I’m so sorry. You can keep calling and see if anything opens up.”

I sighed, “Ok, I’ll take the first available in November.”

The nurse paused, “Is there static on this line?”

“Oh,” I said, moving Sammi back down to my lap, facing down, “No, sorry. That’s my baby. She breathes like that after she nurses. It’s loud.”

“That’s your baby?” the nurse asked, quietly.

I said yes.

“Can I hear that again, mom?” she asked.

“Sure,” I said, suddenly both frightened and hopeful. I picked Sammi up to a seated position on my lap and held the phone near her mouth. She rasped and gurgled as always. I brought the phone back to my ear. “Was that enough?”

“Yes,” she answered. “I’m going to get her in this week. Can she come in this week?”

We could. Mom and baby could come in that week, and did, that week and countless other weeks, over and over to that children’s hospital to see that and many other specialists. In all that time, only one doctor would ever call me and my husband by our names. It seems a small thing — and it was, in comparison to the quality care Sammi received — but dismissing me as anything but the next in the series of moms, the role and not the person, that made it harder.

Few medical professionals ever really saw me. They looked right through me — I became a ride back and forth to the doctor, a reporter of facts, a dispenser of medication, a cook for whatever medically restrictive diet Sammi would come to be on over the years. I was lower-case mom, and I resented it, even as I put that resentment aside in the name of answers and treatments.

It doesn’t have to be this way. I’ve communicated with many other parents of chronically ill children — or even perfectly healthy children — who have pleasant, personable relationships with their children’s doctors. Specialists seem less friendly, with surgeons the least likely to know even their patients’ names. This doesn’t make them bad doctors, and I’m willing to admit that it may be this detachment that allows them to get through years and years of what would otherwise be painful encounters with frightened human beings in pain. Disassociate, and what they’re left with are a list of problems to solve, not lives to improve.

Funny how that works, isn’t it? I would come to learn that lesson by osmosis.

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Becoming Amazing

sammi chewing on my pantsWith the diagnosis and all the accompanying realizations about why the first year of Sammi’s life had been what it was came a less obvious change in my life as a mother:

I became amazing.

In the span of one bronchoscopy — the real thing, the right test that showed us that her airway was 70% constricted — I went from that crazy, unhinged, unreasonable mother at whom everyone shook their head to the heroine of my family. My stubborn insistence on nursing her past her first birthday became a gift all acknowledged as selfless and stroke of genius. My willingness to hold her when she cried, carry her in a sling against my chest, sing to her and not utterly fall to pieces at the news of her upcoming cardiac surgery — all of these were held up as Brilliant Motherhood Personified.

Just look at her. She’s an incredible mother.

I felt like grabbing everyone who said that by the shoulders and shaking them, not just then but for years to come, through all of the followups and complications and all of the diagnoses and procedures, and saying “WHAT. IS. MY. OTHER. CHOICE?” Truly, I have never understood this statement, kind-hearted and well-intentioned as it is. It’s a statement that claims there is something magical about a mother who does the right thing for her child; there is something truly special about a mother who listens to her instincts; there is something miraculous about a mother who puts her foot down and says “I will not stand for my child’s discomfort a moment longer.”

Truly, that mother is all around us:

She is saying “no” to homework for her sensitive eight-year-old.

She is walking away with her back turned from her kindergartener who is sobbing, knowing that her presence only makes him cry harder and that he’ll have a great day in his classroom once she’s gone.

She is pushing the pediatrician to look in her toddler’s ears just once more because she knows there’s an infection from the way his nose is running.

She is feeding her six year old the same chicken nuggets and carrot sticks every night because dinner is not the battle on which she wants to base their relationship.

And she is me, standing in a hospital room with four-month-old Sammi, who is screaming and screaming against my chest, IV under a splint in one arm, unable to nurse because her breathing is too fast. She is me, begging the nurse to do something, knowing this is not how Sammi cries, knowing that being held and sung to is always enough. She is me, shocked beyond words at the suggestion by that nurse that Sammi’s pained, hysterical wailing could be soothed by a Baby Einstein video, shocked and stunned that the nurse would shake her finger at me and tell me that I should know by now that babies cry sometimes and we don’t always know why.

She is me, four hours and a nursing shift change later, drenched in sweat and holding Sammi in the crook of my arm in a hospital bed, both of us deeply asleep after the new nurse discovered that Sammi’s IV had infiltrated the tissue of her arm, filling her skin with IV fluid from the tips of her fingers all the way to her armpit. With the IV removed, the screaming had stopped, and Sammi and I had collapsed, utterly exhausted, into that bed to sleep, pressed into each other for the rest of the night.

I was an amazing mother when I was preparing and getting Sammi through every surgery, but I was an amazing mother like all other amazing mothers every time I listened to that voice in me that told me something was wrong. That’s not amazing, really. That is what motherhood requires of us.

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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


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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Blame Needs a Target

When Sammi was a newborn, the sleep deprivation was expected and, though unpleasant, not unreasonable. Ronni had not slept well, and I was ready for Sammi not to sleep well. When her 90-minute-maximum sleep schedule extended into three months, and I was back at work, I gave in and hired a postpartum doula to come twice a week and give me five consecutive hours of night time sleep. I felt no end of guilt around this; other mothers could survive on this kind of broken sleep without help, and even if they were miserable, most of them could not afford the kind of help for which I was paying someone. I needed that sleep to function, and so I fought past my blame of my own body for needing it, and I slept for five consecutive hours, twice a week, for about six weeks, until I had to quit my job. Every night after that was broken into tiny fragments of light, fractured naps between feedings.

Still, this all felt temporary. Time crawled by as winter turned to spring. Sammi was growing more slowly, but she was not sleeping any better. Against the raw and crackling synapses in my brain that convinced me it was wrong, her new pediatrician and every other adult in my world convinced us to sleep-train her when she was eight months old. We opted for a method that seemed less cruel than others and promised she would be sleeping through the night in a maximum of twelve days.

floorNothing can describe the kind of screaming she maintained for hours every night. Following every lesson in the sleep book, I waited as far from her in the house as I could between scheduled “check-ins,” but the sound followed me. I cowered on the hardwood floor, hands over my ears, rocking like a traumatized child. I felt the screams vibrate through my heart. I was exhausted by months of sleep deprivation, fear of illness, and the completely new world I was inhabiting, but there was something more.

A mother understands the quality of her baby’s scream.

She was not screaming in frustration. She was screaming in pain. I knew it. I said it. I said it on day one and day four and day twelve and on day twenty-seven, when no one could believe how long it was taking to sleep-train Sammi.

Five months later, when she was finally diagnosed with a cardiac condition that involved, in part, her aorta wrapped around her airway, we were told that anytime her blood pressure rose, she would feel her airway constricting. It would hurt, they told us. Don’t let her get worked up until she’s had surgery.

Before we knew for sure, before a CT scan confirmed the diagnosis of double aortic arch, I blamed myself for being a poor parent who could not teach my baby to sleep. It must be, I thought, that she knew I didn’t really believe in sleep training; or that I was eating something that upset her stomach as it passed into my breastmilk; or that I hadn’t checked her bedroom well enough for drafts or spiders or wild wolves which must be charging at her crib as I rocked on the floor, listening to her screaming from the floor below.

After we knew for sure, I blamed myself for not pushing her doctors to find out what was wrong. I knew all along. I knew something was wrong; I knew that was screaming-in-pain, and I had not stopped it. I had not fixed it. All she needed was to be calmed, have her blood pressure drop so that her aorta would stop strangling her. Instead of holding her, I left her alone in there, to scream and choke all by herself.

Once I knew, I didn’t stop holding her. Not ever again. I am holding her still.

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