Blogging Friends.... Did you know....? That September is Craniosynostosis
Awareness Month?! Well. It is!! In honor of my birth defect--and everyone who
was born with it--here is a Blog post from an adult survivor's ever-evolving perspective!!
{Mine, of course!!} Whoops, that sounded so very self-obsessive!! Carrying on. Love
you later.
Sorry for not posting on Beautifully Unique since--gasp!!--August 30th. That was purely unintentional. Truth be told? My
heart has apparently not been
into Blogging lately. Plus this post wasn't yet ready!! But writing? It
keeps me sane!! So I have written nearly every single day!! Now. Do not worry
about me. I am fine.... I'm not experiencing
any minor mood swing-infused pity
parties!! I have just simply found myself in a prolonged season of soul searching regarding living with folliculitis decalvans. Life is good!! And I am happy!!
{These facts were taken from my Life Story!! Which, originally? They
were taken from--if memory serves me!!--The Jorge Posada Foundation!! He has a
son who was born with my birth defect.}
Craniosynostosis is when an infant’s sutures fuse too early and it
affects the growth of the brain. Often, the end result is an infant with an
abnormally shaped head. An infant’s brain begins to grow before birth and
continues to grow throughout the infant’s first three years of life. At birth,
an infant has 40% of his/her adult brain volume and this increases to 80% by
three years of age, and to 90% by seven years of age. An infant’s skull
consists of bones that are separated by soft joints called 'sutures'. The 'soft
spot', or fontanel, is where the sutures meet on the top of the forehead. As an
infant’s brain continues to grow, the sutures continue to grow. Throughout an
infant’s first three years of life, an infant’s sutures will close or 'fuse' in
sequence. Craniosynostosis may involve the premature closure of a single suture
or multiple sutures in the case of a syndrome. Craniosynostosis, if left
untreated, can cause severe and permanent damage. An infant may have increased
intracranial pressure, seizures, neurological deficiencies, eye problems,
malalignment of the spine, and cognitive and developmental delays.
Craniosynostosis. Over thirty
years ago, I was born with a head of curly
brunette hair. And I had craniosynostosis.
Translation? I was born without any soft spots!! 1 out of 2,000 babies are typically effected by craniosynostosis.
There are five different
forms of this birth defect. Unicoronal. Metopic. Bicoronal. Sagittal. And, the rarest type of
craniosynostosis. Lambdoid.
It affects 1 in
100,000 births. Since I'm fairly confident that--according to pictures--my form of
craniosynostosis was sagittal, I am 1 out of 2,000. You
know what? I have grown to really love that statistic!! 1 out of 2,000!! Although. 1 in 100,000 would have been even more awesome!! My skull had been horribly disfigured--Mom said that it protruded from the forehead
and back--when Dr. J. entered our Lives. He would perform twain separate reconstructive
skull operations. Together, these surgically-created
scars form an upside down "T". My
"part"? It is twain craniosynostosis scars!! As a matter of fact. Dad even
teasingly referred to me as "Frankenbaby" due to these scars. Yes, Frankenbaby!! But it was spoken lovingly, of course!! Ha. And Dad was not kidding. I have seen pictures. I did
resemble Frankenbaby!! "Surgery
will be just like setting a broken arm," Dr. J. confidently told Mom and Dad. However. If I--an adult
"Cranio" survivor--were to describe
the operation in three words, it
would be this. Invasive. Terrifying.
Miraculous. See, Dr. J. removed parts
of my skull--and at one point threw
some forehead bones away!!--then "rebuilt"
it like an intricate, detailed Lego
creation!! Not once. But twice!! Dr.
J. said that my craniosynostosis was "severe", and he had never seen such a bad case!! Shudder!! I had also been apparently
suffering from painful migraines
because of skull pressure and I'd stopped sucking Mom's breast milk, unbeknownst
to her. See. My mouth had latched onto Mom's breast. But I was not sucking any milk. That figures. Even back then I was putting on "brave acts" during times of suffering!! Was this an inborn trait?! I cannot help but wonder. See, I was a different case of craniosynostosis.
Because while this birth defect--best as I can tell from research--is not in any way, shape, or form, fatal,
when Dr. J. surgically repaired me,
he saved my Life!! Yes, without his hard-earned skills and God's Amazing Grace, I would be dead!! Craniosynostosis, for the most
part, only affects male infants. I am, most assuredly, a girl!! Although
females can be--and are--born with craniosynostosis. It just is not as likely to occur. Any Google-search of
craniosynostosis will--honestly!!--spin
in this direction. A concerned mother expressing that her son has just been diagnosed with the neurological birth defect. It
is seldom ever daughter. There are
even craniosynostosis awareness Websites
that manufacture onesies, bibs, and T-shirts which feature the phrase:
"Chicks dig scars". Why yes,
they do!! This I can personally prove!! So, I am a girl, who was born with craniosynostosis. I broke that medical rule. Thus,
as per usual, I am exempt!! Which
can only mean one thing. I was born a rebel!! Yes, it is my birthright!! Being
a rebel!! I shall call this "Cranio Girl Power"!! You know what? That has a nice ring to it!! "Cranio" Girl Power!! The
cause of craniosynostosis is unknown. It is sporadic. It can be present at birth (congenital).
It can be hereditary. The hereditary form often occurs with other defects. Uh-oh. I was also born with congenital diaphragmatic hernia and Wolff–Parkinson–White syndrome!! Well!! I do have
a nephew, "J.", who was born with craniosynostosis!! Not sagittal, though. And they told my oldest
sister that it was not hereditary?! Hmmm.... However, most cases of
craniosynostosis occur in a family with no history of the condition. See. It is by "chance" that infants are ever
born with craniosynostosis. Like the rolling of dice. Or some gambling
game. I--among every other individual born with craniosynostosis--am like Heaven's
poker game with chips, cards, and money bet. I must have been
"chosen". For reasons beyond anybody's--beyond my own--comprehension. But not God's. I didn't know until recently that
my craniosynostosis was "severe", or I'd been suffering from painful
migraines and stopped sucking Mom's breast milk. However. I have always
known this. Mom and Dad accepted
Jesus Christ as their Savior because I was born with craniosynostosis!!
See, I had been scheduled for operation number three. Dad complained
to a co-worker about our problems. "Take your daughter to my church,"
he boldly suggested, "There she'll be prayed for. She'll be healed!!"
Which is exactly what Mom and Dad did!! They
drove to his Pentecostal foursquare church {Which, sadly, no longer meets
there!!} I was prayed over, and God healed me, for I no longer needed operation number three!! Thanks be to God!! You know what? I
believe this was a triple miracle!!
Dr. J. reconstructed my skull!! God healed me!! Mom and Dad became Christians!!
Yes, I have always been aware of our
family's testimony!! But I never looked at that positive. Why? Because, as
resulted from being born with craniosynostosis and having my skull reconstructed
{Twice!!} I live with unwanted premature
short-term memory loss. And that is what--for far too many years!!--I
chose to focus on. The negatives. But
my premature short-term memory loss {This learning disability} is what I
lost through being born with craniosynostosis. Look at everything I have gained in Life despite having been born with craniosynostosis!! Because today? I am thirty-years old!! I have owned twain beautifully unique mutts--first Shadow Sunshine and now Rose Elizabeth!!--since I was nearly
sixteen years old!! I just wrote my
thirteenth--13th!!--fictional book!!
I have twain adorable nieces under
the age of three, "Amethyst"
and "Opal"!! Wow. None of
this--and then some--would have ever
occurred sans Dr. J.'s hard-earned
skills!! Not to mention God's Amazing
Grace!! And now? Over one year ago, I was diagnosed with folliculitis decalvans. I am losing my beautiful hair. Eventually I
will be completely bald. In a matter of time, I'll unveil those twain hidden craniosynostosis scars. And lately? I have felt self-conscious--ashamed
even--of my craniosynostosis scars!! And during the rare, fleeting occasion when I delve into feel-sorry-for-me thoughts/feelings/emotions? Honestly? I think that somebody such as myself should
not have
folliculitis decalvans. Somebody such as myself should not be losing her hair. But
complex thoughts/feelings/emotions set aside? Until my diagnosis of folliculitis decalvans,
I was never grateful for any of the positives that have arisen from
being born with craniosynostosis/Dr. J.'s skills. And now? Although, I do continue to feel self-conscious of my craniosynostosis
scars. I am actively working on that!! When I think about my Frankenstein-like craniosynostosis scars? I am thankful for them both!! Because I'm so very
glad to be alive!! Question. Why did it
take a journey with folliculitis decalvans for me to truly become thankful for
my craniosynostosis scars?!