Layton, Utah (UT) - Trisomy 13: Partial
| "We celebrate
each accomplishment and have completely bought into our
little family mantra... "Where there is Great Love, there
are always Miracles." We truly believe this and know that
there are many other little angels out there who are
struggling with situations far worse than ours, and some who
have already fought and lost their battles.... We know that
they are choice spirits of our Heavenly Father who have
completed their purpose here on earth and are now with him,
anxiously awaiting the time when they can be reunited with
their families again someday... This is our hope and
prayer."
 |
Update 2-3-08
Indie Marie Smith is our first child and was born a little before
midnight on March 19th 2007. Her arrival was highly anticipated and
planned for. We couldn't wait to get her in our arms! Jessica's
delivery was somewhat long and drawn out with a fairly rough ending
on both mommy and daughter.
Indie came out "face up" which made the last bit of the labor
difficult and caused fairly extensive bruises on her little head and
body. However, she finally made it out and was a healthy 7 pounds 2
oz and 19" long. Her first little cries were a big relief and one of
the sweetest sounds I have ever heard. We had a few minutes with her
before she was taken to the newborn ICU for some follow up after the
rough delivery. We got her back that night at an hour that was
previously unknown to me until that moment....4:00 a.m.!
We were unaware of any problems while Jess was pregnant and had no
indication of serious problems during the delivery. We did get the
feeling after the birth that things were not perfect, but were not
told anything until the following morning. The house pediatrician
spoke with us and told us that there was a chance that she has some
kind of "syndrome" even though he was not sure what type. At first
we were told that it could possibly be Down or Turner's syndrome and
she was admitted to the NICU, this time for phototherapy to bring
down her bilirubin levels.
The next few hours were like nothing that we had ever experienced.
On one hand, we were terribly worried and concerned with the news of
possible problems, but on the other, we were completely filled with
an overpowering love and peace just being in her presence.
They never tell you just how much you will worry, and you are never
prepared for the overpowering feelings of love that you have all of
a sudden for this new little baby. Jess and I were both completely
amazed! After a few more long hours, the neonatologist in the NICU
explained that he was sure that it was neither of the previously
mentioned syndromes, but he was worried that it may be Trisomy 13.
After several different diagnostic tests, they found that all her
major systems were functioning well and that she was doing great. We
were so relieved and grateful to finally get her home about a week
later when her bilirubin levels had come down. It wasn't until
several months later, that we finally got results from the genetics
lab confirming her diagnosis of partial trisomy 13. After all the
other tests, she was also diagnosed with agenesis of the corpus
callosum, a small atrioseptal defect, and a tiny cataract in her
right eye all of which, should cause her no significant problems in
the near future. We were thrilled.
Indie is now ten months old and is an absolute joy! She is still
doing exceptionally well and growing like a weed. She is sitting up
and rolling over and is becoming much more expressive with her
little voice. She is slowly learning to eat solid foods as long as
she can feed herself, and she is a pro at creating monster messes
and looking ever so cute in the process. She currently is seen by a
loving crew of physical, occupational, and speech therapists and is
closely monitored by a wonderful pediatrician, geneticist, and
genetic counselor. They have all been so great with her and have
helped her so much, we are very blessed! Her smile is infectious and
she is not afraid to laugh at any moment. She loves camping,
golfing, and hangin' with her cousins and little friends. But most
of all, she loves to swim! She loves the water just like her mom and
dad and has already logged many hours in the pool. We as her parents
feel so completely blessed to have her here with us and couldn't be
happier that she has done so well thus far. We celebrate each
accomplishment and have completely bought into our little family
mantra... "Where there is Great Love, there are always Miracles." We
truly believe this and know that there are many other little angels
out there who are struggling with situations far worse than ours,
and some who have already fought and lost their battles.... We know
that they are choice spirits of our Heavenly Father who have
completed their purpose here on earth and are now with him,
anxiously awaiting the time when they can be reunited with their
families again someday... This is our hope and prayer.
Meanwhile, we will continue to update this site so we can share the
accomplishments of our little Indie... If you would like to keep
more up to date than this, you can take a peek at Jessica's blog "smithology"
at
http://jessicamariesmith.blogspot.com She is great at
keeping it updated with stories and cute pictures! We also are open
to anyone who would like to talk or share stories with us through
e-mail please feel free to contact us anytime.
Tony & Jessica Smith
s.anthonysmith@gmail.com
1-21-08
Indie is 10 months old as of a few days ago and doing fantastic.
There are no major physical problems of concern and she is learning
new things every day. She is the sweetest little thing in the world
and we couldn't love her more!
Tony & Jessica Smith
s.anthonysmith@gmail.com
Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)