when i was in labor with my oldest son at twenty nine weeks (my cervix is woefully incompetent and should be fired), neonatalogists bum rushed me with photos of preemies and explained he may not be breathing when he emerged two months early. i was told he would weigh between two and three pounds and most likely be rushed to the NICU right away.
he was born hours after a bright, full moon set and the sun rose to take its place. it was a moonstruck moon- one so bright that it woke me up out of the deep sleep that precipitated active labor. for almost nine years, i though it was a harvest moon but wikipedia tells me it was about a month too soon since the first frost was weeks away (an aside on the neil young link. ah neil young- no matter how many times i’ve heard certain songs, i still choke up. your songs strike a raw nerve that take instantly carry me back to buried sorrows. last week, someone mentioned your loving care of your sons with cerebral palsy and i remembered again how i love you. i thought of parents who care for special needs children everyday without holding them up for glory and pity. your words, your songs, your love for freedom and family. neil young- you are my poet.)
when he was born, he cried. i felt my breath return as i lay propped in the delivery bed. i saw your pink face, spiky hair and full cheeks. i think the first words out of my mouth were, “he isn’t that small!”. 5 lbs, 2 ounces with healthy apgar scores and perfectly functioning lungs screaming that the doctors were wrong.
the neonatologist checked you over and delivered you back to my arms all bundled up in a foot-printed blanket and tiny hat. you weren’t crying anymore and looked at me like, “what?”. you knew you were early but wanted out and that attitude has followed you ever since. if you want something, you want it and can’t not want it. oh you were so sweet, soft and beautiful. the doctor mentioned something about your ear being something of a concern which i hadn’t noticed because your face was the only skin showing under the swaths of cotton. he showed me your tiny ear lobe that was attached to cartilage that never unfurled during your development. a “stand alone chromosomal defect like an extra finger” that was no real cause for concern. i thought, “no one will ever swap out my baby in the nursery. i will always know it is him because he has a unique ear. that’s good.” i was so relieved that you were healthy that i didn’t care about your different ear.
i am still incredibly grateful that he is healthy and we escaped the misery many preemie families endured- the pain that we would later endure when his triplet siblings beat your record by arriving a month earlier into gestation. he came home to me after 18 days and we have been close ever since. i understand his motivations and moods, recognize the impatience and curiousity that was present the day of his birth on a daily basis and appreciate his intelligence and sweet nature. even when his temper flairs and he drives me crazy, i completely love him.
i began to worry about his ear after the whirlwind of his birth and hospitalization passed. i worried that he would hate it and it would cause kids to make fun of him. i bristled at kids asking what was wrong with his little ear but part of me loved this unique feature. as he grew, i took him to specialists and researched the best methods for repairing the appearance of his outer ear and learned our limitations on opening up that ear so he could hear. i learned his inner ear is perfect but his middle ear bones are fused together. i was told his hearing would never be much better in that ear even if an ear canal was created because the middle ear never formed correctly to conduct the sound into your inner ear. i spoke to audiologists and ear, nose and throat doctors about bone conduction hearing aids. i made pro and con lists about surgical repair methods and followed a specialist to two different hospitals. i asked you what he wanted to do and i asked my son what he wanted to do. i took you to meet with a child psychologist who recommended surgery to prevent self-consciousness and bullying over this birth defect.
two years ago, we started with the first surgery to correct the ear. the doctor’s words gave me the expectation that his ear could look very similar to his “normal ear”. the three hour initial surgery was horrible. when he woke up from anesthesia, i had to rock him like a baby because his head and skin graft site hurt. i sat with him while he threw up from the medicines and sat shocked when the bandages came off revealing a swollen, “meaty” looking ear with stitches criss-crossed through it. the doctor told me it would get better as the swelling went down. it did but it was by no means “normal” looking. months later, i took him back to the hospital to endure a second surgery to work on the ear some more. i learned that the surgeon would not be creating a fake ear canal hole the way he implied in our initial meeting. i was told that the ear would “never look perfect”. we went back for a third, emergency surgery two days before halloween last year to repair part of the graft that didn’t heal. i watched as your head was unwrapped again and my heart pounded in my chest as i saw that it still looked far from “normal”.
four months ago, i questioned the surgeon and he snapped at me that he “couldn’t see the future and didn’t know what the ear would look like a year from now after it “settled down.” today, we saw the surgeon again. when i asked what the skin would look like as it continued to settle down and was told that it was settled down and what i see is what we get. the doctor suggested a fourth surgery to move his ear lobe and place a wedge behind his ear to angle it out like his other ear. i didn’t even ask about the zig-zagging scar across the ear, the permanent scar across my son’s head where hear doesn’t grow. i asked about the hair that now grows out of the skin graft the same way it would if it was growing on your leg and the doctor said he’d had to endure laser hair removal (not covered by insurance) at a later date when he could withstand the pain. i was never told that uneven hair growth was a factor in the skin graft. it seems logical now but it, like so many other things, was not mentioned during the hours of pre-surgery consults.
i usually take my kids to the doctor by myself but i cried to my husband that i needed him to go with me to talk to this doctor. i am not easily intimidated and rarely get flummoxed by doctors. i have done hours of research on my kid’s various physical issues and can speak to lily’s specialists with no problems. pediatric specialists ask me what i think should be done in my daughter’s care and i’ve been asked by multiple doctors and nurses if i work in the medical field because i know what i’m talking about in great detail. i am not a pushover but this doctor makes me nervous, angry and intimidated. he speaks very fast and is defensive when i imply i am not happy with the results of three painful surgeries. the surgeon looks at my son’s ear and talks to me like it is the best his ear could look. i do not believe it is.
mike sat in the doctor’s office today and listened to the doctor’s rapid-fire assessment. he didn’t ask many questions and i barely said a word. we didn’t tell the doctor we were unhappy because it didn’t feel like there was a point. the surgeon’s rushed bedside manner makes us feel small and powerless in the treatment of our child. if we say we aren’t happy, he doesn’t seem to care. he wants to perform another surgery but we don’t feel it will improve the appearance of his ear.
we walked out of the office and i tried very hard not to cry. i was angry for not telling the doctor exactly what i thought of his performance and bedside manner but didn’t want to do it in front of my son but i also felt there was no point because he wouldn’t get it. how could he think his ear looks the best it could look? is he in denial because he did a bad job or is this really how it is destined to look?
there are specialists in other cities that could consult on his ear but they don’t take our insurance and i don’t know how we would afford to travel and leave the other kids for his surgery. there are two other children’s specialists in our area and i will be making appointments with both of them to get their opinions on our further options. i just don’t understand how in this age of outrageous plastic surgery that transforms the faces and bodies of the rich and famous, why a surgeon can’t recreate a relatively normal looking ear for our child. is it because he is on state-covered insurance and we don’t have money for the best doctor? if so, i feel like a failure for not being able to provide the best for him and am pissed off that money is the issue because that isn’t fair (that is the virgo in me- a passion for fairness and equality).
my son is going to be nine years old in two weeks. he is healthy, whip-smart, resourceful and gives me a hug and kiss every time he goes to bed or leaves for school. mike and i sat down with him and asked if he liked his ear and asked what he wanted to do. he says he doesn’t want another operation right now but would go see another doctor for a second opinion if we took him out for lunch after and let him stay home from school after the appointment. he said today he wanted to celebrate how well his ear was doing. i am humbled by his answers.
maybe i’m overreacting and think his ear looks worse than it actually does. maybe the secret is letting his hair grow out longer and accepting this is the way it is going to be. but if that was the case, i would have rather stayed with his ear the way it was from birth. i would not have made him go through three painful surgeries and created additional scarring from skin grafts if i had known two years later, it would look as abnormal as it did in the beginning but in a different way. i feel guilty for caring too much about this or the idea that he may think i’m disappointed in his appearance. i simply want his ear to look the best way it can look and don’t feel like this doctor has done this. i want him to look “normal” as he goes forward to junior/high school and worry what other kids will say. i obsess over bullying that hasn’t even happened yet and want to protect him. i feel guilty for obsessing over his minor problem when other kids have more severe, heartbreaking problems. i feel guilty for not having a damned magic wand to make it all better.
i am lucky to have a kid as great as he is and i want the best for him. he has defied the odds from the start and his ear may add to his appeal but i wish i could rewind two years and start over. i’m not sure where to go from here. do i sent the surgeon a letter condemning his bedside manner, lack of communication skills and poor results? would it matter? do i seek out other specialists for further opinions? do we wait for extreme ear makeover to come over and give him a perfect outer ear and restored hearing while renovating our house/sending us to disney world? i need feedback. what would you do?
