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Shawn was born on 2/1/95. He spent 16 days in the NICU. We knew
nothing before he was born, my pregnancy was as they call normal, until
I went into labor 4 weeks pre-mature. When he was born they knew there
was a problem. He had to be put in an oxygen little dome around his
little head. He had a large ear tag, that fell off the first night, with
two more little ones that he still has. He also has an extra toe, which
has been removed. We then found out that it was a chromosome
abnormality that caused all of this. He has webbed feet. He is also
blind, with no optic nerves. He was only 4lbs.7oz. at birth. He is
still very small for his age. He has pulmonary stinosis, multicystic
kidneys, and decreased muscle tone. The genetic doctor wrote in her
findings that he has bilateral colobomatous microphthalmos, and
bilateral corneal leukoma, patent ductus arteriosus and that they
thought he has a left polycystic kindey. But he has multisystic kideys
instead as per the urologist. The genetic doctor also wrote in her
report that he microcephaly, receding anterior hairline, anterior
fontanel is full, left eye is smaller than right, corneas appear cloudy,
small nose, flat nasal tip, bilateral thin helices, long ill-defined
philtrum, thin upper lip, normally sized tounge with evidence of tight
frenulum, grade II/IV systolic ejection murmur at left 0parasternal
border, postaxial polysynadactly of the left foot, he has signifiacant
dysmorphic features and development delay, He has duplication of
chromosome 10 from 10q22 to the terminal end.
Shawn is now
doing pretty good. He is attending a special school through the state
and doing well. He is now trying to sit up and starting to crawl.
They're also putting him a standing table to stregnthen his legs and
back.
Update - July 13, 2016
It has been a long time since I have given any new information on Shawn. He started having seizures, cebral palsy, more heart problems, pneumonia after he reach puberty. Things were ok for a long time, then his heart started giving him more problems with hypertrophic cardiomyapathy. We had been blessed with him for 21 years of joy. This is after the doctors told us he wouldn’t make it to one. He passed away after his kidneys couldn’t keep up and his seizures were getting worse. He passed at home with us. His family had all been praying and stopping by to check on him in his last couple of weeks. We decided to take him home from the hospital so he could go in peace. We will all love and miss him dearly. 2/1/95 to 2/14/2016
Michaelle and Colin