How many of us actually endeavor each day to
make a difference, And not just to those who are closest to us? Do we dare to reach out and share our
knowledge, skills, and compassion with those who are mere strangers?
Is it solely our choice or is it hard-wired into
us so that we could not ignore it no matter our efforts?
Do we set out to leave our mark or does our mark
reveal a Great Plan that was in-motion long before we even took our first step?
Eleven years ago, my husband and I began a
journey of enormous proportion, one that we could never have dreamed of ... not
even in our grandest imaginings. We stepped onto the path of adoption.
During our first meeting at the adoption agency,
we were surprisingly shown the information sheets of three little girls that
fit our willingness to adopt a child between the ages of 2 and 5 with minor,
correctable needs. My “Google" search led me to believe that 'minor,
correctable needs' were most often related to cleft lips. I read that the
condition was easily corrected with a simple surgery and in my naivety, I was
certain that this was something we could handle. We were prepared to accept a child with this
special need.
However, of the three children whose information
was presented to us on that first visit at the agency, … the two who, in fact,
had a cleft lip were being pursued by other families. There was, at that moment, one little girl
left, between the ages of 2 and 5 with a minor, correctable need. At first glance, we pushed aside the sheet that
contained a small black and white photo and a tidbit of information about her. But God had different plans … and we changed
our minds that day and chose to pursue the adoption of that little girl with a
facial defect that we didn’t know or understand about.
By the time we met her, we didn’t care at all
about her facial difference or her scars, but someone who heard that we were
adopting a child with a facial defect came to us to tell us that we should bring
our daughter to Children’s Hospital of Wisconsin Center for Craniofacial
Disorders and request ONLY Dr.
Denny. A few months after our little
girl joined our family, she had her first appointment with him.
He opened our eyes to the world of craniofacial anomalies such
as Molly’s (hypertelorism with meningocele) and the surgical correction for such
a case, the “facial bi-partition”. It was difficult to grasp the physical change that would take
place with Molly’s face once the surgery was complete. I remember actually fearing the fact that she
was going to look “different”, even though “different” meant more normal. Even though it was explained to us what would
take place during the surgery and even though we had researched the procedure
on the internet, we really had no idea what it would actually be like until we
experienced it. By the time she had her first surgery, she had been a part of our family for exactly one year.
After a long day of waiting while the surgery and recovery
processes took place, we were told that we could wait in the hallway because
the surgical team, along with Dr. Denny, would be bringing Molly through as
they took her up to the ICU. We would be
able to see her for a moment before we would also be transferred up to the ICU
waiting room while Molly was transitioned.
I remember Dr. Denny’s face … he was clearly really pleased with the way
her face came together and I think he expected that we would be just as pleased. However, seeing Molly for that first time, head completely shaved, incised and
stapled ear to ear, and her face swollen and sutured along her nose and between her eyes, ... well, ...
I cordially agreed with Dr. Denny when he asked us, "Doesn't she look fantastic??" but after the team rounded the corner down the hall away from us, I remember crying so hard that I nearly threw up. I was shocked! I was afraid! I was inexperienced and unknowing!
But, I learned so much from the experience. Dr. Denny guided us through the entire healing process and how to care for our daughter. We were amazed when she was able to return to school only two weeks after surgery. Because of her, … because of him, … who we WERE "changed". How we saw things changed. There were others like her, born in a country, to a society that often looks down on a person so visually imperfect, a place where children born with physical defects are almost always abandoned. Left to grow up in that society, these children become outcasts and street beggars, non-benefitted and uncared for by the government or the people. So we found Brynn, a little girl born in the
same province, in the same month, listed with the same congenital defect as Molly.
As it turned out, Brynn's condition was not as severe as Molly's and she did not need a facial bi-partition. Though we were mentally prepared to go through it again, we were thankful that Brynn would not need such a severe surgery.
With Brynn's surgery, we experienced and researched and learned even more.
We now had two little girls who, left in the land of their birth, would likely be condemned to a life of poverty, neglect, and very little, if any, opportunity ... ALL BECAUSE THEY LOOKED DIFFERENT.
Several years went by and the call to adopt came once
again. No sooner had we begun our
discriminatory search for Chinese boys with facial defects, we found Jonah and
Rees, listed separately, both with severe facial differences, and noted as
being best friends. We knew that we were entering territory that would be MUCH MORE than we had gone through with the girls but one look at these boys and it was impossible to say "no".
Of course, we
contacted Dr. Denny’s office right away.
We wanted to be sure he was still there because we knew retirement had
to be looming in his future at some point.
Upon viewing the bits of information we sent to him, his response was a
witty, yet confident, “I can fix them.”
Adopting these boys and meandering through their medical journey
has been the most challenging thing we have done thus far. Once we made the official decision to pursue
adopting them, I began researching the various terms listed in their limited
files of information. Jonah was listed
as having a “Tessier #7 bilateral facial cleft.” I truly had no idea what that was. I only knew about cleft lips and cleft
palates. But apparently, there is an
anatomical classification of fifteen (15) types of clefts that can occur. "It was first described by Dr. Paul Tessier in
1976, and classifies the location of facial, craniofacial, and laterofacial
clefts, using the orbit (location of eyes) as the primary structure for
reference."
http://www.cleftline.org/docs/tessierinfo.pdf Detailed information
on Tessier clefts on the Cleft Palate Foundation website.
I became fascinated with the information I was reading on Dr. Tessier’s work and the
information regarding clefts and their surgical repairs. So, I began to research more about him. This was brand new territory for us and we
expected that Jonah’s treatment was going to be extensive and intense. We did not know a thing about clefts, especially of this sort.
But I began to fit together pieces from the previous nine years ever
since Molly’s first surgery that I didn’t even know were being fitted into a
bigger picture.
So, flashback to 100 years ago ...
"In 1917, a boy was born to a wine merchant in a
coastal town within Nantes, France. The
boy wanted to be a shipwright or a forester, but chronic ill-health
disqualified him from both. I think God
had other plans for this young man. His
name was Paul Tessier and in 1936 he entered medical school where his training
included maxillofacial surgery with some exposure with operations on cleft
lips. In those days, conditions much
more beyond cleft lips were deemed inoperable but Tessier envisioned MORE. He had a propensity to widen the boundaries
of maxillofacial surgery, which was met with indifference bordering hostility
by many of his colleagues. So, he left
France to research and study from leading plastic surgeons in England and even
America.
In 1957, Dr. Tessier was head of the Foch
Hospital near Paris, France and he was aware of multiple patients in need of
medical attention who were simply being ignored because it was believed that
nothing could be done. Because of his
interest to expand the capabilities in treating persons with facial defects,
“the Paris medical establishment blocked Tessier’s access to the dissecting
rooms, so, with characteristic resilience, he travelled 250 miles to Nantes
every evening, practiced on cadavers until the early hours, and then slept on
the 2 ½ hour train ride back to Paris.
During his persistent, tiring, devotion to enhancing treatment
possibilities for these patients, he developed a method of completely detaching
the facial bones and repositioning them using grafts of the patient’s own
bone.”
“In 1964 he performed the first
repair of unnaturally widely spaced orbits, working from behind and showing
they could be freed from the skull. A turning point came in 1967, when he
presented his series of craniofacial operations to conferences in Rome and
Paris.
Soon, surgeons from around the
world were coming to Paris to train under him …”
Dr. Tessier is considered to be the Father of
Craniofacial Surgery. Before him, it was
never done. Before him, no one dared to
go beyond what was known, ... to push the boundaries of knowledge, … and we are simply amazed to discover that our daughter had a facial bi-partition only
forty years after it was performed for the first time on a live patient.
Interestingly, I recalled when we were first getting acquainted with Dr. Denny having read that he completed his fellowship in 1986 in Paris, France. At the time, all I could think was, “why on earth would he go
all the way to France to do his fellowship?”
"...and since then, virtually every craniofacial surgeon on the planet has either trained under Tessier or one of his pupils." (borrowed and adapted from Paul Tessier’s obituary posted on: https://www.theguardian.com/science/2008/aug/28/medicalresearch.highereducation”
It wasn't until ten years after we adopted Molly that this all made sense to us, that we realized the significance of all that we had learned and experienced up to this point. It was Jonah's speech doctor who told us that Dr. Denny had been Mr. Tessier's Fellow and that he was one of the last practicing physicians who had worked with Dr. Tessier. We asked Dr. Denny why he felt he should go to Paris for his fellowship. He said he had wanted to learn from the source … the direct source … nothing else would do. And THAT is one of the things that we have admired most about Dr. Denny … his unwavering determination to seek and to achieve the best outcome. I even secretly felt I should ask Dr. Denny for his autograph ... I mean ... really, ... he trained with and worked alongside the Father of Craniofacial Surgery ... he's practically famous!!
We have wondered what it was that made him want
to become a doctor … what convinced him to become this type of doctor ... but all we have to do is look at our children ... and we know the answer.
Truly, the most growth and experience, surely for us, but maybe even for Dr. Denny, has come from our boy Rees. When we saw his photo for the first time, we immediately thought his medical situation was the same as Molly's; we thought he even looked a lot like Molly. We were once again prepared for the facial bi-partition and all that went with it. However, it was discovered that Rees did not have the same condition as Molly and we found ourselves on a challenging medical roller-coaster of fear and uncertainty.
"One thing after another" with Rees seemed to become the norm and whatever was the expected outcome each time something new was attempted would end up backfiring or being the opposite. Our little guy has had a full range of actions and reactions to each procedure and we now have medical experience we never imagined we would have.
Through all that we and Rees have endured, Dr. Denny has taught us, explained to us, cheered us on and encouraged us ... to be strong ... to be brave ... to be confident ... not to worry ... even though I admit that my first thought would most always be "worst-case-scenario." He was always honest (told us he was stumped when he was stumped) and we understood him enough to know that he always gave us only as much as we needed for that moment and enough to get us to the next moment.
Perhaps
our children don’t truly realize the significance or see their medical
transformations the way we do. Right
now, they are young and view what’s happening to them more likely as a nuisance
instead of a miracle, but … take Molly, for example …
We certainly didn’t adopt her and Dr. Denny didn’t perform her surgeries JUST so that
we and he could be gratified by her positive response.
But sometimes, it was difficult, because
it seemed as though the impact of her adoption, her facial differences, her
surgeries … were completely lost to her.
And in all honesty, that’s really okay.
But then she saw what Dr. Denny did for Jonah and Rees.
Ten
years after her facial bi-partition, she has seen the faces of these two little
boys, whose features were severely abnormal, be incredibly transformed into something ... well, ... more
normal. And NOW, … she wants to be a
doctor and she wants to attend the Medical College of Wisconsin and she wants
to work at Children’s Hospital of Wisconsin.
It wasn’t missed. What we saw him
do in her, (which propelled us to seek out other children who needed similar specialized medical care in addition to a family), she saw him do in them. And it has meant something ... something more than a corrective surgery, a paycheck, or plight for normalcy ... it is the indisputable truth of insecurity, fear, and rejection being exchanged for confidence, opportunity, and equability.
When we look at Dr. Denny, we realize he’s just a man; we do not see a god … but rather a man who was greatly gifted by the All-Powerful God with an incredible propensity for the knowledge and skills that would give a voice to the voiceless and hope to the hopeless ...
