Welcome Friends!
Emma K.
Utah
Birth Date - January 5, 2006
Main Diagnosis - Chromosome Deletion
THEME: EMS Babies
Biography
Emma Nicole Kubiak was born January 5, 2006 weighing 7 lbs., 20.5
inches long at 3:08 am. She had an NG feeding tube placed on her second day of
life, was given an NJ tube before leaving the hospital due to severe reflux and
aspiration and now has a gastronomy tube. Emma spent 16 days in the hospital
before she was finally able to come home. She has been diagnosed with a
chromosome 6q25.3-qter deletion, a congenital heart defect known as Tetralogy of
Fallot, microcephaly, and is developmentally delayed.
Emma had her first open heart surgery on June 27, 2006 at Primary Children's
Medical Center in Salt Lake City, Utah to repair her heart defects. The surgeon,
Dr. John Hawkins, patched the large hole between the bottom two chambers of her
heart, widened and patched her pulmonary artery with donor tissue, and in the
process had to cut across her pulmonary valve also. She will need a valve
replacement at some point in her future.
On September 20, 2006 at 8 1/2 months old Emma had a gastrostomy tube placed to
help her get the nutrition that she needs while we work on her eating and
swallowing skills. Emma has always been on a tube of some sort, whether it's
been an NJ or NG. Emma is routinely seen at the Dyspahgia Clinic at the
Children's Hospital and has been in feeding therapy since she was just a few
months old. While at age 7 she likes to "snack" on a Cheeto every now and then,
she is still 100% tube fed, and vomits regularly.
On April 11, 2008 Emma had a 2nd open heart surgery. Dr. Hawkins replaced her
pulmonary valve with a 21 mm porcine valve (a pig valve). He also did some
reconstruction on her narrow pulmonary branch arteries, widening and patching
them with donor tissue, all the way across from one lung to the other. She will
need her pulmonary valve replaced again at some point in time, but we're hoping
it will last for at least the next 5 years.
After having her annual echocardiogram done in 2012, Emma's heart is showing
moderate stenosis (narrowing) of her pulmonary branch artery again. Her heart
is still stable for now, but we know that more "fixes" for Emma's heart lie in
our future.
Emma has always been about 50% behind developmentally. At 16 1/2 months old she
finally learned to sit up on her very own from a lying down position, at
19-months-old Emma learned to crawl, and at 33-months she amazed us by learning
to walk! At age 3, Emma only had a couple of words in her vocabulary, so we
began private speech therapy, and now at age 7, she can carry on a simple
conversation with us! It's not always easy for an outsider's ear to understand
her, but she has made huge progress! We know that things do not come easily to
her and we are so thankful for each milestone that she is able to conquer!
Emma is in a special education classroom for school, and is assigned a regular
1st grade class for the fun things like art, music, library, parties, etc.
Everyone at her school just adores her, and Emma has never met a stranger! My
husband and I joke that she knows more people than we do!
She is such a sweet little girl, always smiling in spite of her problems. Her
big sisters and brother love her so much and she has been such a blessing to our
family. God has been with us all each step of the way, and I know He will
continue to guide our path.
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