"My Baby's Hungry!":   How The medical establishment dismissed A mother’s insights into why My premie Was failing to grow

 

Just under two months ago, I held my grandson, Adam Joseph, for the first time. The son of my only child, Kendra, was born on March 21st.  I took in the baby smell, the softness of his skin, the silkiness of his hair under my cupped my hand that held his head.  Filled with emotion, tears threatened to run unchecked down my cheek and be absorbed by his hair.  I had expected emotion.  Instant love. Joy.  But there was something else.  Was it a sense of loss?  Why? Then it dawned. This was the first time I had ever held regular new born  so close. I could hold him without fear.  My daughter, born over thirty-two years before had weighed two pounds. She spent the first two months of her life in an incubator.

 Kendra at 6 weeks

Kendra at 6 weeks

 Adam Joseph at 3 weeks

Adam Joseph at 3 weeks

 

It was Christmas day, 1985.  After a sumptuous meal with close friends in Boston, I leaned back in my chair and looked around the table contemplating next Christmas. My daughter due in seven weeks on February 14th. would be ten and a half months, the first baby in many years, among a room full of adults ranging from their early twenties to late sixties.  I imagined her, chubby and energetic, crawling all over the place, getting into mischief.  Disquieting moments interrupted these thoughts as I became increasingly conscious of a lack of movement in my womb.  An occasional half-hearted kick, a fluttery feel, but not the earnest kicking I expected Just a quiet day, I convinced myself. On the drive back to New York late on the 26th, my uneasiness mounted.  Then a barely discernible kick would pull me back from the brink of anxiety. She’s alive. It’s nothing. She just isn’t an active baby, probably bodes well. She’ll be a sleeper. 

Back in New York, I woke early the next day with only one thought:  I had to my obstetrician.  As I waited for her return call. I ran my hand gently over my stomach. “Please, little one, be alright. Please don’t be under stress.  Please, please….”  I took deep breaths and tried to stay calm, willing my body to be kind to me and let me have this baby at her due date, healthy, no hitches.

The telephone rang. I grabbed the receiver. A male voice. My heart sank.  It wasn’t my doctor. Dr. Woolf introduced himself as her partner and told me my obstetrician had been up all night handling a life-threatening birth. He heard me out and told me to head for the hospital for a non-stress test.  His voice was reassuring.  Suddenly my worries seemed unfounded.  What on earth was I panicking about?  I shouldered my large maroon messenger bag filled with work and set off, now confident that I would be continuing downtown to my office in no time.

A chatty technician hooked me up to the fetal monitor.  We both stared at a horizontal line that pulsated across the screen. “Looking good”, she said.  “The heart beat is between 140 and 150, as it should be.” OK, I thought, she’s alive. “However, the line is straight”, she continued. “It should be dancing up and down.  You will just need to lie still until your baby moves.  Even if it takes hours.”  She touched my shoulder, a kind expression on her face, and walked towards the door.  “Just try to relax.”   

Soothed by the steady beeping of the monitor, I lapsed into a drowsy state and began to relive the last few years.  My breast cancer diagnosis at thirty-seven that was treated with radiation and wide-excision; the mastectomy a year later when tests revealed more evidence of cancer in the same breast; the widely differing opinions from the doctors I consulted from “Get pregnant tomorrow, you’re cured” to “You’re too a sensible young woman to play Russian roulette with your life.”   My oncologist was the steady voice through all of this.  He advised that I wait two years and then live my life as if cured. My cancer was slow-moving cancer – “indolent” - and unlikely to return.  We followed his advice, and I got pregnant promptly after the two-year interval.  All seemed to go smoothly. Until now. 

After about one and a half hours, furious beeping of the fetal monitor woke me with a start. My daughter had kicked. I looked at the screen.  The straight line had taken a sharp dive. Within seconds both technician was in my room, fiddling with the connections to make sure they were tight. “What’s happening?” I asked, now frightened.  “Your baby’s heart rate has dropped to 60.  That’s very low.” Within minutes Dr. Woolf was staring at the monitor. “We need to do an ultrasound to see what’s going on”, he said.  What was “going on” involved coils of umbilical cord, a tiny baby and virtually no amniotic fluid.  When she kicked, the umbilical cord tightened dangerously around her neck, depriving her of oxygen and slowing her heart rate. 

“Well,” Dr. Woolf said, smiling from above his white coat and his stethoscope draped around his should, he said, “You are going to be a Mom today”.  He left the room to telephone John.  About 45 minutes later he rushed in. Always light skinned, his face was now so pale his skin looked translucent, his crystal blue eyes bugging out of his head, his usually wispy blonde hair an oily matt from perspiring in his haste to get to me.  He said nothing as he took my hand.  I cried for the first time.  We barely had time to hug before I was wheeled into the operating room and put under a general anesthetic.

When I surfaced through the drugged fog, I was still under the bright lights with John at my side.  “All’s well”, he said.  

           John with Kendra at 6 weeks

          John with Kendra at 6 weeks

“How much does she weigh?” I asked.  He hesitated. “Two pounds”, he said, his words barely audible.  Then in a stronger voice: “But really, really she’s going to be fine. I could only hear the weight. Two pounds!  Two pounds?

 Kendra at 6 weeks:  First photos

Kendra at 6 weeks:  First photos

“Can I bring your baby to you?”  It was a woman’s voice.  I looked up, still woozy, to see a hand extending from a white sleeve, placing my baby across my shoulder. She was tiny, scrawny, reddish hued. Her head, smaller than a tennis ball, was turned away so that my first glimpse was of her straight dark brown hair.  I looked away.  The emotional pain was as sharp as any physical pain. I looked back at her.  I didn’t touch her.  How could a baby so impossibly small survive? Then the same white-sleeved arm took her away and she was whisked off to intensive care.  All I felt at that moment was terror.  

Dr. Woolf paid a visit soon after. Standing next to my bed, touching my arm in a friendly manner, he told me what had happened. A fibroid had grown under my placenta, robbing it of its nourishment.  The little that made it through supported her lungs, heart and brain. She was SGA, small for gestational age. “You saved your baby’s life by being so alert,” he said.  “Two more weeks or so and the outcome would have been very different.” 

The next day, fighting the pain of my incision, I was pushed by John in a wheel chair to the NICU on the twelfth floor.  Loss is what I felt. No baby to hold and cuddle, no baby to breast feed and sing lullabies to. Instead I had gained horror, fear, intense worry.  What would be the result of her deprived gestation? Brain damage?  Physical disabilities? Learning difficulties? Problems I could not even imagine?  

My arms hanging limply by my side, I stared into the incubator at my daughter. She was naked except for the tiniest white cotton knit tube pulled over her head, smaller than a tennis ball, to keep it warm.  Cotton discs covered her eyes to protect them from the light shining on her to treat the jaundice that had accompanied her birth.  Her upper arms were thinner than my little finger. She looked like twelve inches long wrinkled frog, with her feet pulled up towards her body.  My tears dripped onto the glass. I cried in fear and anguish for this little person. 

A young Latina woman sat cradling her baby and watching me.  “Habla Espanõl?” she asked.  I shook my head.  John did and he went over to her.  “Tell your wife, I cried like that too.  I was so unhappy and scared for him.  But look at my baby now.”  He was close to five pounds and seemed positively huge compared to my two-pounder. “He is just fine.  Your baby will grow just like him.”  It wasn’t sure.  

Four days later, on New Year’s Eve, we stared at the TV that hung below the ceiling in my hospital room, listening for the phone to ring to tell us whether our tiny baby’s bilirubin count – the measure of jaundice – would necessitate a full blood transfusion. We tried to joke: “We’ll call her Billy Ruben if she comes through.”  

Laughing faces pressed themselves against the glass of the TV screen and into our room, seeming to mock us in our misery.  The famous glistening ball descended, heartbeat by heartbeat, marking the last moments of 1985, as we clung to each other.  This may yet be the worst year of our lives.  Finally we fell asleep, John on a cot the nurses had brought in for him, me in the narrow hospital bed.  The phone never rang.  We awoke elated. She had won her first battle.  

The day after I was discharged I met Dr. Davidson, the neonatologist who would be our daughter’s doctor.  He ambled into the bleak waiting room provided for parents of babies in the intensive care unit where I was trying to nap on the green vinyl couch.  The hard couch was too short for the length of my body, and I had to gingerly unfurl myself in order to sit up and return his greeting. I took in his laidback demeanor, his empathetic face under a full, bushy head of dark brown, on its way to gray, hair. He was encouraging about her future. “She’ll be fine.  She just has to grow.”  I still found that hard to believe.  But I immediately took to him, sensed his competence.  I could relax.  My puny baby was in good hands. Each day that she showed her tenacious resilience was a day I could allow hope to drive a wedge into my dark musings.  

About ten days after her birth, John walked over to her incubator, pen in hand, and took down the pink card attached to the side of the incubator.  He crossed out “Female Urdang” and wrote in “Kendra Urdang”.  It was a bold assertion that our child would survive.  She was finally entitled to a name.  

Slowly, I could laugh again.  “I’m trying to imagine,” said a close friend over the phone, “what an infant who weighs the same as a two-pound plucked chicken looks like!”

“That’s it!  That’s exactly what she looks like”.  I repeated the conversation to a nurse.  “We call them Frank Perdue rejects”, she chuckled.  Our little Frank Perdue reject.  She couldn’t even make the grade.  No plump, tender chicken this one.

Kendra she grew almost imperceptibly.  The wrinkles began to smooth out.  A little flesh began to insinuate itself between her skin and bones. Any tears were now from emotion and love, not fear and pain. I knew I would fight for her through thick and thin. 

I had to fight sooner than I anticipated.

We had agreed to put Kendra on a breast milk study that was looking into the benefit of adding a supplement to breast milk for premies. One of the advantages was that she would leave the neo-natal ward with its row upon row of incubators for one with three incubators, where Kendra would get more attention, where we could spend the days and nights with her, where the atmosphere was intimate and friendly. 

But as I emerged out of my post-birth stupor, I began to bump up against a pervasive medical culture beyond the confines of the ward that I found virtually impenetrable. It showed little regard for me as a mother who was going through a tough time. The medical establishment had claimed control over Kendra and I ceded control. I was her protector, but I couldn’t protect.  I often felt accused.

My first challenge was Marilyn, who oversaw the study. I saw disdain in her blue eyes underscored by a defensive tone of voice she adopted when I raised what I thought were fair questions. 

 Kendra at 6 months

Kendra at 6 months

 “I don’t seem to be able to express enough milk,” I said. “Luckily she drinks so little,” I added, an offhanded comment to counter my fear that as she grew I’d be unable to keep up with her need because I only had one breast. 

“Nonsense!” she shot back.  “I know mothers who feed triplets perfectly well from two breasts, and with plenty of milk to spare.” Then she added, “You need to relax more.  You’re too uptight”.

I turned to stare into the incubator at Kendra, my back to Marilyn, trying not to show her how vulnerable I felt.  Comments like this fueled my sense of inadequacy as a mother. I became aware of Dr. Davidson’s presence, his eyes looking straight at me from the opposite side of the incubator.  He reached over, touched my shoulder and smiled.  “She’s doing just fine”, he said.  “And anyway, if you don’t want her, I’ll take her. I’ve always wanted a daughter.”  It became a standard joke between us. Talking to his wife on the phone in front of me, he told her that they had a daughter at long last.  “I’ll bring her home as soon as she’s fat”.

The next run in with Marilyn was over liquid baby vitamins. Marilyn brought a small bottle from the hospital store to show me. An inveterate reader of labels I caught artificial flavors as an ingredient.  I shook my head.  

“For Heaven’s sake”, she said, “They are made especially for babies. How likely are they to contain dangerous substances?”

“Throughout my pregnancy”, I responded, now defensive myself, “I ate only organic and natural food.  I am not about to agree to artificial anything now.”  She was about to protest again when Dr. Davidson’s calming voice intervened.  “Why don’t you buy the vitamins at a health food store and bring them in,” he suggested, ignoring Marilyn.  “If they pass the grade, we’ll give those to her.  OK?”  I nodded in gratitude.

I managed pump just enough milk to keep pace with the size of Kendra’s food requirement and went on to other concerns to obsess about.

For instance, Kendra’s weight.  Each morning I would wait for the battle ax of a nurse, the warden of her chart and the only unfriendly nurse, to leave the room so I could sneak a look to check her weight. We could take her home when she had reached five pounds. Some mornings her there was a slight gain, some mornings it was lower than the day before. I would rush to the pay phone to let John know the score.  We were frantic when there was no increase.  Then I began to note a pattern.  After I fed her the teensy bottle of milk according to amounts set by the study, she would squirm and wail, searing my heart.  John would report the same when he fed her at night. One of us tried to be there for all her feeds. 

The more I watched her move around her incubator burning up calories, the more I was convinced: she was hungry.  I was thrilled. I had the answer to everyone’s concern about her lack of weight gain!  I began to share my mother-daughter understanding with her various health care providers.  I put my case to a sympathetic resident who had befriended me and told her what I had discovered.  She fished a small calculator out of the left breast pocket of her white coat. Holding it flat in her hand, she punched in some figures.  She paused to examine the result, her brow wrinkled.  Then she looked up, eyes straight into my eyes and pronounced: “No, Kendra’s not hungry.”  

I accosted Dr. Banerjee, the study’s head. “Kendra’s hungry,” I told her.  She clearly wasn’t interested in my insights. She began avoiding me. It became clear:  I was a nuisance mother.  No worse, a neurotic mother. Even my ever-loving, patient John, whose anxiety about her weight was as acute as mine, dismissed my revelation.  He had no reason to doubt the doctors.  I felt like a wolf baying at the moon.

While Dr. Davidson did not place me in the “neurotic mother” category, he didn’t buy my explanation.  Nutrition was not his terrain; he deferred to Banerjee’s expertise.  Then a dysmorphologist, a doctor who specializes in genetic malformations, took in her low birth weight and failure to grow, as well as her high forehead and proclaimed she had Russell Silver syndrome.  She was a “midget”, unlikely to reach more than 4 feet, 7 inches.  “Good news!” Dr. Davidson announced a few days later.  “Russell Syndrome has been ruled out!”  John and I were fabulously delighted.  Until I read the report in the chart.  80 percent certainty but more time would be needed to rule out the remaining 20 percent.  And then I few mornings later the words “Imp: Growing slowly” jumped out at me as if written in Day-Glo. I waited anxiously for his next visit. 

“Are you concerned about Kendra’s growth?” I said, trying to sound casual while not admitting I had committed a no-no by reading the chart.  He didn’t hesitate. “Yes, I am. Kendra is growing too slowly.   We have decided to add a high calorie formula to her feed and see how she responds”. 

I checked the chart more eagerly on the following mornings. No change. The pattern continued.  If all it was that she was hungry, and this stunted her growth, what would it mean for the future.  I began to get frantic.  

As part of the study, Kendra was whisked her away once a week to a lab on a different floor for tests. All I knew was that her miniscule heel was dotted with pin pricks.  I asked Dr. Davidson what was happening there.  Dr. Davidson suggested I go with her to see.   They placed Kendra on a raised platform, covered in a white sheet and began to stretch her out to measure her height.  For her it was an unnatural position. They had to pull her legs and hold her down to get a reading.  She began screeching with unhappiness and probably pain.  I stood horrified as if watching a torture scene.  I began to cry myself.  One of the doctors took my arm and led me out of the room and shut the door. I could still hear her wails. When she was returned to the ward I held her close, singing to her and apologizing for not protecting her.  But I also found some anger within me.  

By her projected birth date, she had barely reached the four-pound mark. She should have easily been five pounds by now.  She should have been home already.  Dr. Davidson and I stood watching Kendra as she navigated around her incubator, doing a dance with her skinny little hands. By then he had also gone to watch her tests.  "She burns calories like there is no tomorrow," he had told me.  Now his expression turned  contemplative.  He inhaled so deeply I could hear him and turned to the three nurses. “What do you think? Is Kendra hungry?”  Without missing a beat, Jill directly at him and replied in a somewhat belligerent voice, “We all know Kendra is hungry. Sometimes when the milk bank sends extra milk.” Her daily amount is careful quantified. “When we feed it to her she drinks it without problem and she is much calmer afterwards.” 

Dr. Davidson looked taken aback.  Jill simply shrugged.  His tone changed. “OK, let’s do this,” he said in a positive voice.   “Dispense with measuring her milk. Feed Kendra as much as she wants. Let’s see how she tolerates it”. 

After Dr. Davidson left, Jill spoke with irritation “They only listen to their books and not to the needs of the individual child," she said, her jaw fixed tight. “Until clinically shown otherwise, we should have gradually increased Kendra’s feed.  As far as I could see, there was no reason not to”.  

Vindication was staring me in the face. Finally, there was acknowledgement that I had not been taken seriously even though I knew in my gut that I was right. Not only me, the nurses. They, like me, knew Kendra.  They, like me and John, were with her many hours a day.  No doctor had ventured to consult me or them.  No medical professional, until now, had taken my insights seriously. Neither had the nurses’ superior knowledge of my child been even considered.  It would be a while, when I was feeling less emotional, to acknowledge the sexism in this culture.  How women, whether mothers or nurses, were not considered reliable judges of those they cared for.

Over the next few days Kendra gained weight steadily without sliding back. She was transformed from a fractious, irritable, crying baby to one of contentment.  I watched as she kicked her feet, looked around with keen interest, and slept soundly when tired.  About four days after Dr. Davidson’s intervention, she was close to four and a half pounds. Half a pound to go!  Dr. Davidson entered the ward, read the chart and stared at Kendra asleep in my arms.  

“Take your baby home,” he said.  “You know more about her than we do.” Then he put his hand on my arm.  “I am sorry for not listening to you.  I was wrong,” he said with a self-deprecating smile that asked for forgiveness. He had listened to Dr. Banerjee’s explanation for keeping her nutrition down, he continued, because it would affect her growing heart valve.  “Even though I didn’t necessarily agree, because she is one of the world’s experts in premie nutrition.”  I was so relieved that I had finally been heard, that I didn’t then appreciate that this man, this wonderful doctor, was also part of the dismissive medical establishment. At least he did finally acknowledged her hunger.  For this I was grateful.  And I respected him for his willingness to apologize. How many doctors are willing to admit their mistakes? “Take Kendra home”, he repeated. 

The next day we did just that. 

Kendra remained small for her first years.  By Grade 6 Kendra was tallest in her class.

Now as I hold Adam in my arms, I marvel at his softness, his even breathing.  I feel a connective pain when he wails from colic.  I am reverted back in an instant to the cries of hungry pre-term Kendra.  But as I hold his head in my hand, rock him, try to comfort him, I know this is a phase.  He is growing as he should, developing as he should.  And in the end, so did Kendra.  

[Note: I have changed the names of the medical practitioners.]

 

 Kendra and Adam at two months

Kendra and Adam at two months