Our Story

This site is for our daughter, Skyler Sue.


Four day old Skyler


She was born on February 9th, 2012 and weighed in at just under 5 pounds (4 lbs, 13 oz). Leading up to her birth our only concerns were whether or not we could find affordable daycare, if the house (her room specifically) was ready & how our 2 dogs would react to her arrival.


Skyler was a C-Section baby because she was small & breeched.  Since she was far enough along (37 weeks) her Dr. said it would be best to get her out & let her grow. The surgery was quick and before we knew it there she was, ready to start her life with us.


Nothing could have prepared us for what happened next…


Within minutes of her being born she started having seizures. At first it just looked like she was twitching & kicking her legs around out of excitement. But after awhile it developed into full body spasms where her spine would stiffen up and her eyes would roll back in her head. This lasted for about 2 hours. Fortunately, a local pediatrician was able to administer Phenobarbital (a seizure medication) to calm her down and she was eventually transported to a Level 3 Neonatal ICU.


After a few days of visiting her in the NICU it became very clear to us that her condition was not only serious, but potentially life threatening. Early on we were told by her Neonatologist that she may have a chromosome abnormality called Trisomy 13 (an extremely lethal genetic disorder). At that moment we were terrified for our daughter…unsure of what her prognosis might be and what kind of life we could expect. Then we found out a few days later that she did not have any kind of Trisomy, so of course we were relieved. But at the same time we were told that her MRI revealed something else.


Skyler holding on to her mother.


There is a very rare condition called Lissencephaly, which literally means “smooth brain.” A normal brain has several folds & grooves on the top, but in Skyler’s case none of this ever developed. Towards the end of gestation her brain just stopped developing. She’s been through chromosome & genetic testing to try and determine a cause, but up to now these tests have all been negative. So for whatever reason this was a completely random occurrence and since Lissencephaly is so rare (11 out of every 1 million babies) there just isn’t enough information out there to tell us anything more.  Along with Lissencephaly, she also has a condition called Microcephaly (basically means ‘small head’) & Myoclonus (involuntary muscle spasms & seizures).


Skyler’s prognosis is not great (we’ve been told her life expectancy could be anywhere from 2-6 years), but we’re happy that she will at least have a fighting chance. It’s impossible to predict what the future truly holds for her, but we realize there will be several limitations in her life. Enjoying simple things like seeing her smile, holding her in our arms and even changing her diaper makes us happier than we ever imagined. So even if her life is short, memories like this will last a lifetime for us. Our goal is to keep her as comfortable, safe & healthy as we possibly can. We will hope & pray that she eventually surprises us, but no matter what happens she’s always going to be our little miracle & the love of our lives.


Update (5/16/2012):


Skyler graciously passed away in the loving arms of her family on Sunday, May 13,  2012. She had multiple organ failures  and could no longer breathe on her own. It was difficult to let her go, but far more difficult to watch her suffer. We are saddened at how short her life was, but we take comfort in knowing she is no longer in pain, and left us with so many happy memories…memories that will last a lifetime.


We will miss you Skyler Sue, and despite your limitations, you were always perfect to us. You filled us with more joy in 3+ months than we will have in a lifetime. You’ve taught us to appreciate every day we’re given and to show love & affection to those who matter the most. The pain of losing you will never go away, but we know you’re in a better place now, where you can spread your wings and live up to your full potential.


So goodbye Skyler…Sweet Pea, Little Princess, Our Angel…your memory will never fade and knowing that we will see you again someday is enough to keep us going.