What’s Your Story?

TOWPATH TRAIL YMCA

Everyday is a Miracle: Superhero Chance
September 2018

Eighteen weeks into her pregnancy, Stephanie and

Jason Haines discovered that her son had a one out of nine
chance of being born with down syndrome. Figures which are
so astronomical, the doctor whom she was seeing had never
seen the odds to so high for an unborn child. But when it
came time to take an ultrasound, the doctors had found
something completely different from down syndrome. At this
point, Stephanie’s obstetrician had been persistent that the
better option would be to abort her pregnancy than try to
survive the difficult road that lay ahead of her and that’s
when she decided to take a chance on her miraculous baby
boy, Chance Haines, who was then named in recognition of
the chance his parents had taken on him.
Chance’s initial diagnosis was of hydrocephalus, or
fluid on the brain, and weighing 10 pounds and 3 ounces at
birth, his condition was undeniable as it contorted the size
and shape of his head, “the alien baby,” his parents called him. 25% of babies born with
hydrocephalus have no other standing medical issues, however, Chance’s medical history
was just starting. He spent seven weeks in the Neonatal Intensive Care Unit (NICU) where
on his second day, he had his first brain surgery to insert a shunt that would drain some of
the fluids off of his brain. During this time at the NICU, the doctors had uncovered two
more complications in Chance’s health.

Chance was born without a crucial part of his brain, the corpus callosum, or the part
of the brain that separates the right side from the left. Often times, the lack of a corpus
callosum causes a vast array of health issues, such as seizures, cognitive impairment, poor
feeding, poor coordination, vision or hearing impairment, or developmental delays,
however, Chance suffers minimally from the lack of his corpus callosum in comparison. He
was also diagnosed with Hirschprung’s Disease which left him with damaged nerve cells in
his colon. Due to this, for six months after his birth a catheter was used to help him expel
waste from his body until he was able to have a surgery done that would remove eleven
inches of his colon where the nerve cells were found to be dead or damaged.

Shortly thereafter, the doctors uncovered a cyst on Chance’s brain that left that
particular section of his brain damaged and undeveloped. The doctors went back in an
added another shunt to drain the cyst off of his brain that was beginning to cause him to
have seizures sporadically, but it wasn’t until August of 2016 that Chance would have
another major surgery. This time it would be for his diagnosis of Chiari Malformation, a
disorder caused by his hydrocephalus. As the fluids weighed down on his brain, it began to
shift and grow farther and farther down his spinal chord until it became necessary to
decompress his spine before any further complications occurred. The doctors removed
some of his vertebrae and part of his skull to make room for his brain to grow, so as not to
disrupt any other functions of his body.

After his Chiari Malformation surgery, Chance began to have bad seizures quite
frequently and within six months, he was in the hospital again to have 3/4 of his brain
removed. Without his parietal, occipital, or temporal lobes, the doctors left his parents with
the notion that he would be in an in-house rehab facility for a minimum of one month
where he would be unable to walk or use the right side of his body. They told them that he
would still be Chance, but that he wouldn’t have the capacity to do much of anything, yet
five days after his surgery, Chance was at home recovering with flying colors and
astonishing all of the doctors.

Even through all the hardships that Chance has been through, he is still suffering
from frequent seizures — enough so that his mother sleeps in his bed with him in case he
would have a seizure during the night. The family is looking to invest in a seizure dog, who
would spend the nights with him and alert the family when he is having a seizure, and the
YMCA’s Miles that Matter run in September of 2018 will be helping them to raise the funds
to get one. Overall, the family’s goal is to get through it all and to increase awareness and
acceptance of disabled children. Their strength comes from every bit of progress and the
numerous times that Chance has defied the odds. It is by faith that they have made it this
far.

When he was born, one of the PICU doctors believed he would never be able to
perform basic developmental skills. Since then, Chance has left the doctors in awe as he
continues to meet milestones that were once unthinkable for his conditions. He now walks
without a walker and enjoys walking on the treadmill.
 Chance started kindergarten at Fairless Elementary this past year and won the
hearts of many, including a girl named Kenzie. The Towpath Trail YMCA Miles That Matter
5K was established in 2014 to support Kenzie who had been newly diagnosed with cerebral
palsy. Now, years later, you can find Chance pushing Kenzie in her wheel chair and
sneaking a kiss, as to which he shares her reaction was “eww”!
Chance Haines is a living, breathing, miracle who has defied the odds in every
occasion. He has went from the boy who was never supposed to be able to do anything to
the boy who can do everything he sets his mind to. He shows us that we can’t take
anything for granted and the one thing the Haines’ family hopes we can take away from
Chance’s story is inspiration because they have been made better people by taking that
“chance” on him as a baby. They say:

“Everything is one day at a time because today might be awful, but tomorrow might
be a miracle.”

He performs wonders that cannot be fathomed, miracles that cannot be counted.

Job 5:9

#SuperheroChance

#MilesThat Matter

Written by Emma Stefanick

For further inquiries or to submit your

own story, please contact the author at
estefanick@weststarky.org