Monday, April 16, 2012

Flippity flop














This is a piece I wrote four years ago about Ben's unusual ears and the plastic surgery to correct them that wasn't successful. I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists -- which in our case often came in the form of "If this was my child, I would pursue it" -- can't take the place of careful inner enquiry on the part of parents to understand 'why' they're considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We're often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child's and family's life. And how may we feel if the outcome isn't what we hoped?

Flippity flop
By Louise Kinross

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." Helen Keller

It stands out from his head. It is cupped, missing the typical indentations and folds, with a bit of extra skin at the top. It has been called a deformity, a lop ear – named after the distinctly floppy ears of the lop rabbit. It is my son Ben's right ear, and it was one of a handful of facial anomalies that caught the attention of the midwife who delivered him.

That impossible-to-ignore ear, which vigorously resisted surgical attempts to tuck it back at the head, represents my own struggle as a mother of a child who looks different.

My child stands out. My child doesn't fit in. My child, by some, is considered deformed and ugly.

Ears. I had never given them a passing glance. Who did?

But this particular ear has led me to think long and hard about beauty. What is it? Is it an objective standard? Is it a certain facial symmetry, as suggested by evolutionary theory, which helps us identify people with good genes and exclude others? Can it be altered by the perceptions of the one viewing, or by the personality or spirit of the one being viewed? Is it subjective and fluid, based on characteristics that bring delight to a particular individual? How is it possible for us to see beauty in people deemed ugly by others? Why can our perception of beauty in a person change over time? How do people who are blind detect beauty in others?

Fourteen years ago, as I bubbled with glee at the birth of my first child, I had never had to consider these things. I saw a blurry little body with a mohawk-like tuft of wet hair being whisked away to be suctioned and waited for them to bring him to me.

But before I could hold him for the first time, the midwife returned and put her hand on my arm. "He has some unusual features," she said.

When he was finally passed to me, wrapped up in a blanket with a little stocking on his head, he did look different: his face was swollen, his nose a bit squashed, his chin was retracted and his ears stood out, one smaller than the other and fully cupped. His lips were almost non-existent.

I was concerned, but I wasn't panicked. My body was tingling with joy, endorphins coursing through it like the wind shaking the leaves of a poplar tree.

The hospital pediatrician arrived, unswaddled Ben and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. He was obviously annoyed at being called out at that time of night and he didn't like what he saw. He said our son had "something like a cleft palate" and muttered under his breath: "the timing wasn't right."

An earlier amniocentesis on Ben had come back normal, so it was a surprise when the doctor said Ben had a constellation of symptoms that looked like a chromosome problem. At exactly one-hour-old, the doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

We returned home with Ben in a haze of shock and a black hole of fear.

What did Ben's appearance mean? Would he be mentally retarded as the doctor intimated? How would others react to him? What would we tell them? How do I control what others think (in the early days I naively thought I could)?

"Couldn't we still be a happy family?" I asked my husband on day three.

On day four we saw a geneticist. She said Ben had a greater than 50 per cent chance of having a rare genetic condition associated with "abnormal facies."

But I had already started to see him differently. Outside of the clinical setting and scrutiny, my boy was growing beautiful before my very eyes. Here's how I described it:

2 weeks and a day
You have very delicate features – beautiful blue eyes with extravagantly long lashes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips. You have very light, fair skin.


3 months
You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big big, blue, long, long lashes.


5 months
Your face has changed a lot. Your eyebrows are growing in just like your Dad's – very thick. You have the most gorgeous smile – an all-out, ear-to-ear grin with dimples. You are very masculine-looking. Your body is a miniature of your Dad's.


6 months
It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

I have come to the conclusion that beauty is something we choose to see.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

When I gazed into Ben's eyes it was like looking into a complete world. Ben mirrored back my joy and acceptance. In each others eyes, we were whole. In each other's eyes, we were enough.

And so it was that I could be emotionally broadsided when, instead of delighting in my sweet prince of a boy, others placed his so-called defects front and centre.

When Ben was almost a year he was diagnosed with torticollis; the muscles had developed too strongly on one side of his neck, causing him to sit with his head in a perpetual tilt. As we introduced ourselves to the therapist assessing him, I explained that Ben had a rare genetic condition. "I can SEE that," she chortled.

Ten days later, as Ben lay on an examining table charming a handful of medical students, the surgeon who was to bring down his testicles pranced into the room and demanded angrily: "What is WRONG with his head?"

Medical records show that emergency staff often noted Ben's facial appearance before his pressing medical problems. When he arrived by ambulance with bronchiolitis he was the "settled baby with unusual facies." A trip back to emergency with breathing problems two weeks later yielded this description: "Very unusual-looking baby who is active and happy."

Specialists who were consulted on other parts of Ben's body couldn’t seem to resist documenting that he had "dysmorphic" – malformed, misshapen or underdeveloped – features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. My sister-in-law, a physician, explained that doctors had a code name for kids like Ben: FLK or "funny-looking kid."

When we wrote my uncle about Ben's syndrome he wrote back: "We could see in the photo that something wasn't right."

The genetics counsellor assured me that I had every chance of having a "perfect" baby next time.

The implication that my son was imperfect, flawed, deformed could send me reeling with rage and grief for days.

After opening my uncle's letter, I phoned my friend Candace. I asked her a question I had not dared verbalize – except to my husband – for over a year: "Does Ben look different to you?" I didn't want an honest answer, but this time she gave it to me: "He doesn't look different to me because I'm used to him, but he probably looks different to other people."

I hung up the phone in a fit of sobs. I had floated on the illusion that Ben's differences were subtle and perhaps not noticeable to others. But more than that, I had simply stopped seeing them.

Our pediatrician had always been exuberantly positive about Ben – thank goodness. He even made comments about how Ben's facial features had normalized since he saw him at a few days old. Many friends, trying to be diplomatic and supportive, said they didn't notice anything. Of course I slurped those comments in like a draught of cold beer on a hot day and they reinforced my way of seeing Ben.

In my eyes his differences dissolved because I saw his face and being as a whole. But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Now when I was out in the world, I would suddenly see this boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. It was like I'd been fitted with a new pair of glasses: instead of bringing into focus his merry, dimpled-grin and piercingly beautiful eyes, all I could see were the stark clinical anomalies described in the medical texts: large bulbous nose; downslanted eyes, long philtrum, receeding chin, thin lips, sparse hair, outstanding ears. This new child was a stranger to me.

I began to fixate on the symmetry of normal faces – a certain space between the eyes, and between the nose and the mouth. Ears that were mirrors of each other, tucked tight against the head and identically placed under the short, little-boy hair cut that was so popular at the time.

Sometimes I would catch myself looking at other children's features and just longing for the same for Ben. "I hate these feelings," I wrote. "It isn't so much that I want this for Ben (that I can't accept him for how he is) but my fears that without a normal or conventional appearance others will not accept him and love him." Sometimes I felt bitter. Sometimes I would take photos of Ben's face and hold them upside down to examine the defects more objectively.

Strangers at the park attributed Ben's facial features and decreased facial movement to a negative mood. "Is he mad?" they would say, looking into the wagon at my passenger. "Is he always like that?"

"No, he's not mad!"

One day, while Ben played at the sandbox, a toddler came, stood in front of him and began to chant: "monkey man, monkey man."

"He wasn't being mean, just factual," I wrote. "I was not in one of those educational moods, and didn't say anything. The child seemed too young to understand an explanation and I didn't feel like saying: 'Yes, Ben's ears do look like a monkey's.' Doesn't this become comical or sad after a while?"

I didn't have experience with people who looked different growing up, yet as a child the question of how appearance could predict a life of happiness or sorrow puzzled me. "What would you do if you fell in love with Frankenstein?" I asked my best friend, Cathy. "I wouldn't fall in love with Frankenstein," Cathy said as she bounced back from a handstand on the street curb.

"But what if you DID?"

I can recall a moment of disturbing recognition when I looked at some photos I had taken of Ben as a newborn, but a couple of years later. I could now see the differences in a way I had not been able to at the time.

Something similar happened when I sat behind Ben at the hairdresser. The mirrors didn't correct his differences like my eyes did – they left them naked and punctuated.

While I would gladly have traded places with Ben for the 15 surgeries he endured (his ear surgery the only cosmetic one), I didn't know if I would have the courage to be so strikingly different in a world that places such value on appearance and conformity.

Over time, we learned that some of the features we had loved as Ben's – such as his extraordinarily long eyelashes and bushy eyebrows – were part of the syndrome.

I had read about parents of children with Down syndrome who had their slightly upturned eyes "corrected" with plastic surgery. This felt like a horribly intrusive and wrong intervention. Why put the child under the knife in order to fit arbitrary social norms? But I could understand why a parent would be led down that path. Down syndrome is so common that the facial features associated with it are an immediate marker of stigma.

One of Ben's first caregivers – a young Polish woman – was horrified when I said we'd considered getting Ben's ears pinned back when he was older. "His ears let people know there's something different," Margaret said.

"That's exactly what's so painful and unjust," I said. "No one wants their child judged in a split second based on appearance."

Ben's ears had always been most remarkable and since he was born we'd been told there was a simple operation called an otoplasty to pin them back.

We visited a plastic surgeon at a renowned children's hospital to find out more.

Dr. S was a young man with Hollywood looks followed by a small entourage of plastic-surgery students. He was kind and friendly and took his time looking intently at Ben's face.

Naively, I expected him to see what I saw. How could Dr. S see anything I hadn't already seen in my boy, who was now 3?

But he did.

"Ben could benefit from a bit of cartilage to create a tip at the end of his nose, which is somewhat flat," he said. "This can easily be done when he has the ear surgery." I had not seen the flatness of his nose – except in the minutes following his birth, when he had the typical squashed newborn look.

Pinning back his ears was one thing, but I couldn't fathom allowing a surgeon to cut into my son's face.

The volume of his cheeks is asymmetrical, Dr. S continued. I couldn't see the unequal shape of his cheeks so Dr. S tried to point it out to me. Was I insane? Why was I not able to see these things?

In addition, my boy's face wasn't as animated as usual due to low muscle tone – his smile not as broad as normal. I had always thought of his smile as one of his most beautiful attributes.

I couldn't reconcile the beauty I saw in Ben – and the delight he brought me – with his medical picture.

We left the appointment with a referral to Dr. W, the surgeon who did ear work.

I struggled with whether we should pursue the otoplasty. I hated that my son would undergo surgery in large part to make other people feel more comfortable. But by this time, Ben had been diagnosed with a whole collection of physical and learning disabilities related to his syndrome. When I asked Ben, who was unable to speak, if the kids ever teased him about his ears, he hit "yes" on his voice-output device. And when I asked if he thought it was a good idea to have the operation to fix his ears, he again hit "yes." Dr. S said they liked to do facial surgeries before the kids entered kindergarten – to "max out" their appearance and minimize social exclusion and teasing. In addition, there was now a strong functional impetus: Ben needed hearing aids and because his ears flopped forward, the behind-the-ear aids constantly waved back and forth, creating a disturbing ringing in his ears.

I was desperate to even the playing field for my boy and remove even one of the many strikes against him.

Other than telling us that Ben was a good candidate for the ear reconstruction, Dr. W didn't tell us what to expect. I don't know why I didn't ask. My understanding of plastic surgery was limited to episodes of Extreme Makeover. I assumed Ben's ears would be made symmetrical, tucked back at his head and equivalent in height. Like other people's ears, I assumed they would look "the same."

Ben emerged from the operation with his new ears bound in layers of white bandages. Dr. W said the procedure had gone well and we were elated. My only concern was the hot, itchy bandages, which Ben was supposed to wear for a couple of weeks.

Ben was highly sensitive to touch, so to deter him from ripping off the head dressing, I purchased some Teletubby hats that came down over his ears and snapped at the chin.

This lasted for about a week. One day I left Ben watching a video and when I came back a few minutes later bandages were flying through the air. My curiosity got the better of me and I allowed him to unwrap the last couple of rounds.

I was crushed. While his ears sat back closer to his head, they were still asymmetrical and very different in size and appearance.

I squinted and reopened my eyes a couple of times. Was I not seeing properly?

I expected two ears that looked the same – the birthright of most children. What had we done? I wondered. Why had we put him through this?

We went back to the hospital a month later and a nurse took out the stitches. A medical student came in, took one look at Ben and said: "I guess you're here about surgery to correct his ears?" I don't remember what Dr. W said. It was obvious that the student had given us an unsanitized assessment.

In the ensuing months, despite religiously covering them as we were directed, Ben's ears would gradually creep forward until they were again protruding significantly. We went back to see Dr. W. He had been featured in People magazine as the 'Smile doctor' because he was an expert in surgery that enabled kids with Moebius syndrome – a condition that caused weak or paralyzed facial muscles – to make their first smiles. We were surprised that he hadn’t been able to work a similar miracle with Ben's ears.

Dr. W said that he hadn't taken enough cartilage out, and that cartilage had "memory" – it always returned to its original position. He'd been worried about Ben's ability to wear hearing aids if he took more cartilage out. He wasn't sure how to make things better and referred us to Dr. F, a surgeon who specialized in constructing ears in children born without them.

Dr. F was surprisingly cautious. "He'll look different," he said, assessing the impact of additional surgery. "But he won't necessarily look better." How had we moved from a simple, quick-fix ear operation to this sobering statement?

As a parent, I felt duped. Why had the otoplasty repeatedly been explained to us as a simple procedure that would correct Ben's ears? Why was there a steady barrage of media stories recounting success with much more complicated and extensive plastic surgeries?

Dr. F said it was because Ben's ear structures weren't normal to begin with. If you have a normal body structure, he said, it's possible to enhance it – which often means making it bigger or smaller. But it was another kettle of fish when you didn't have the normal structure to work with. In other words, the people who most needed plastic surgery were the ones least likely to benefit from it.

"Ben doesn't seem to be particularly bothered about his ears," Dr. F said.

Was it because Ben had an intellectual disability that he didn't think it mattered? Or was it really that challenging technically? I'll always wonder. A quick Internet search for “lop-ear deformity" produced numerous plastic-surgery sites with impressive before and after pictures.

It grates on me that Ben's ear operation wasn't successful. We were trying to do something relatively minor to help Ben blend in just a little better. We knew he would always stick out with his short stature, developmental disability and inability to speak, but at least his unusual ears wouldn't draw attention away from his face, which in my eyes was beautiful.

Perhaps I should have consulted Ben's sister Lucy before deciding on the ear surgery.

"I just love Ben's big ear," she said spontaneously the other day, while sitting beside him at dinner.

Wow, I thought. Ben had always been a given for Lucy, who was born when he was a toddler. I had never heard her comment on his appearance.

I assumed she was talking about Ben's cupped ear – the one that is the most protruding, the most noticeable, and which most resisted the surgeon's handiwork – rebounding vigorously from attempts to refashion it flat against his head.

"No, I mean his taller ear," she said. His taller ear? How could his less-affected ear be called his "big ear?" Apparently Lucy, now 12, saw something completely different from me when she looked at Ben.

"Flippety flop, flippety flop," Lucy said lightly, acknowledging both the unusual nature of her brother's rabbit-like ears – and her complete acceptance of them.

12 comments:

Louise, this is so poignant and beautifully covers the emotional complexities families face over cosmetic surgery their kids with facial uniquenesses. Thank you for your honesty.

During the time I have followed your blog, I have been charmed by Ben and see his features as handsome. I think I'd recognize him if we were to pass in the street, because his features are uniquely Ben. And that would be a good thing, because I know I would like him tremendously.

Besides, a guy who likes Jessie as much as he does obviously has impeccable taste!

I feel like I've read bits of this before or perhaps your writing has been suffused with bits and pieces of this for as long as I've read your blog. I found this piece deeply moving and beautifully written, and like Rose-Marie comments here, particularly adept at describing the emotional complexities that parents face and deal with when their child is diagnosed with some disorder.

I, too, feel like I "know" Ben -- and he is a remarkable boy -- beautiful on the inside and the outside with a shining spirit (clearly bequeathed to him by his parents!).

Louise, we have been pursuing this surgery for Tabitha, and we are now awaiting a date for it. I know that Ben's surgery wasn't successful, but our Surgeons refused to consider Tabitha until now (she is 7), because they told us her cartilidge wasn't developed enough for it to be successful. I think we have to go in to it hoping for a good outcome but accepting that it may not be. Tabitha has not responded as expected to many of her surgeries, and we need to remember that.

I am so grateful for this blog and your honest writing. Tabitha is 10 years behind Ben, and although it is hard to read about what the future may hold for us, I feel your experiences are helping prepare us for what may come.

Sending you and Ben much love, from

Lisa and Tabitha (who also loves Jessie and her song, passionately.)

Thank you Rose-Marie. It would be wonderful to meet up one day!

Hi Elizabeth -- Yes, some of the passages in this piece are similar to ones from the piece I did about having a child with facial difference.

Thank you for your kind words about Ben and our family! xo

Hi Lisa -- that's cool that Tabitha likes Jessie! :)

After our experience, I would ask your surgeons exactly what they believe the outcome will be -- because it could be significantly different than what you envision.

If I had the info in advance about how challenging it would be and the poor likelihood of success, I never would have put Ben through that. It is painful afterwards, and uncomfortable wearing the bandages for days.

Keep us posted!

Louise,

This piece expresses not only a perfect balance of reason and compassion, but the utmost love as well.

And, for the record, "My legs, feet, and toes are no prize to look at. Nonethess, maybe, one day, 'someone special will come along and see the entire package.'"

I love you, Ben, and Lucy.

Matt Kamaratakis

Beautiful, honest and moving Louise.

Your writing describes just some of the heartache and decsiions parents of special needs children face.

Thanks for sharing,
love
Diana x

Like so many others, I thank you for the beautiful and brutal honesty in your writing. It helps so many families. I also completely agree that Ben is very handsome and his spirit really does shine through in the photos you post. Love the photos!

You are right that parents need to carefully consider the "why"of intervention. Perhaps this is my more cynical side because I'm very familiar with how doctors and surgeons think (my husband is also a doctor and works with many surgeons), but I have been wary of surgery-happy surgeons and I've encountered quite a few. The ones who just want to do surgery, any surgery, because they want to or need to for financial reasons (at least in the states). I remember when we were considering a nissen, the surgeon actually said, "I love doing nissens! That's my specialty! Just let me know if you want it done and we can make it happen," without ever considering any non-surgical methods or solutions. This made me suspicious and sent me home to do more research. But on some level, I suppose I can't blame him. He's a surgeon; to him, surgery IS the option, of course...

Thanks Diana -- I am hoping to get caught up on your news!

Hi Jennifer -- I'm glad to see you here. How are the twins?????

That's a sobering comment from the surgeon re nissens -- I've heard of so many families whose children have had problems after those.

But as you say, it's understandable that when we go to a surgeon, they are going to try to provide a surgical solution! They aren't necessarily the person to help parents look at the bigger picture when considering a surgery.

Give your kids hugs for me! xo