SUMMER ~ FULL TRISOMY 13 ~ BORN: OCTOBER 11, 2011
Summer was born almost 6 weeks premature with an emergency c- section. During a non- stress
test at the doctor’s office, Summer’s heart rate was so low so I was rushed to an
ultrasound in the next room where we found that she is under some kind of stress.
The doctor told us go straight to the hospital and you will be there faster than
an ambulance because the baby have an hour at most. Miss Summer was born 20 minutes
from us waking into the hospital, and the reason for her stress was that the umbilical
cord was wrapped around her neck 3 times very tight, basically the cord was strangling
her. When she was born, she had an extra digit on each of her extremities and that was
the first surprise for us. She was rushed to the NICU at the children’s hospital.
When she was 5 days old we had a phone call in the evening from her doctor telling
us that the genetic testing came back positive for trisomy 13, this was my first
time hearing the word trisomy. All night my husband and I were on the internet trying
to understand what trisomy is and how it affects her. I think this was the saddest
day in my life! I was learning that my new baby may just not survive, but then I
found this site Livening with trisomy 13 and had a little hope. The next morning
the doctor meets us in the hallway of the NICU and asks what we know about trisomy,
and then briefly explains that Summer’s chance of life is very slim and tell us that
we have to make some decisions. I ask what/ he says that best for Summer is to pull
her breathing tube out and let her go in peace. I couldn’t believe my ears, and I
asked why? He said that she will not live so why to torture her. I said, she is a
preemie baby and almost all preemies here are on ventilators so why you don’t want
help Summer. I asked does she have any other problems with any of her organs that
are life threatening? And his answer was no. Her dad then said she deserves a chance
for life like all these other babies and we will help her to get it. This when we
knew how hard the road ahead of us will be, not just because of our little sweet
heart’s health but we realized how the doctors feel about this kind of diagnosis
and what it will take to convince them at every step along the way to help and treat
Summer and not her trisomy! Now Summer is 6 months and 3 weeks old, she is eating
on her own, breathing on her own, giving us the biggest smiles, recognize us and
our love to her. Is she behind on her developments? Yes. Does she has some health
issues that keep rising along the way? Yes, and we are getting the doctors to work
on them one at the time. Was it hard to convince the doctors at CHKD to operate on
Summer? Yes, it was, but we talked them into it, it took time but she was doing fine
and there were no other reasons the doctors can give us for not operating on Summer
than that
she is trisomy 13 baby. As of date, Summer had already had 4 anesthesia
for 3 different surgeries and 1 MRI, but we were told over and over she will not
survive anesthesia or any surgeries. She had an incarnated umbilical hernia repaired.
She had glaucoma in her both eyes that was neglected by the NICU doctors as Summer
eyes were never checked after birth even if that is a standard procedure of this
hospital’s NICU, as a result, we are not sure how much vision does Summer has left
but will know by time. She also had/has problems with her urinary system, she had
one surgery to put stint into her right kidney to release build up pressure, and
she still have 2 more surgeries planed for the upcoming 2-
We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa
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