The Day Natalia was Born...
Aug. 25, 2000
We arrived at the hospital expecting to give birth to a healthy baby girl, our fourth
child and we were excited. Upon her birth our journey began.
I'll always remember the first feeling I had when I saw our precious Natalia.
I couldn't believe my precious baby appeared so broken, her eyes,
forehead, cleft lip, ears, and extra digits. I remember hearing for the
first time her diagnosis. Physicians telling me how short her life would
In those first critical hours there were two medical care givers that made an
early impact in our life and Natalia's. The first was a Pediatrician who gave us two options. One to
aggressively treat her or to let her die naturally with her abnormalities.
He gave me the option to help my child with the proper medical treatment.
He, with those words, gave me HOPE.
The second was the first nurse in the NICU (Neonatal Intensive Care Unit).
When I approached the room to hold my child for the first time, I entered
and saw many incubators and a rocking chair. The nurse handed me my precious
little baby. I began to look and examine her as tears filled my eyes and
tears began to flow. The nurse quickly said, "Why are you crying?" I said,
"Look at her, they say she will die." The nurse was firm with a strong
voice. "Look around, many of these baby's have been her for weeks. Their
parents have not been able to hold them. And some my die before they ever
reach their mother's arm's. You are able to hold and love your baby and you
enjoy every moment." I think of those words often. For we love holding our
Natalia and we enjoy every moment with her.
With FAITH in God's Healing LOVE and PRAYERS from family and friends.
OUR NATALIA is the JOY in our day.
Update on Natalia:
Natalia began the New Year at a new school. She is now back
within the local District program in 1st grade. She's now
taking the bus and using her
walker at school. She has vision, speech, OT, PT, O&M
therapies within her
program. Using the Reverse-K walker has enabled us to get a
one on one aid
with her throughout the day, so she is not in the lowest
level program, but
in one where the kids are ambulatory and where she can reach
potential. Its been a good transition, I'm very happy to be
receiving the services we need for her, She loves the bus, I
love the break from driving 2 hours a day and all seems very
good at this point in our lives.
She has a few new tricks...She can now stand up against a
wall and with some prompting, "1,2,3, GO!" She'll take 3-6
steps to you!!!! :) She'll also from a sitting position,
stand up and also take about 3 steps to you. With this new
development, I do believe this little gal may just walk for
us...Please keep Natalia in your prayers for this milestone.
Walking would be a wonderful added blessing to this sweet
child's life...and mine too! Thanks for all your continued
prayers for our family, Blessings, ThereseAnn
Update on Natalia
Full Trisomy 13 - Only having
a few ultrasounds and opting not to have the AFP test
prenatally, we prepared for the birth of our forth child.
We were quite shocked and surprised at birth when she
arrived with a cleft lip/palate and extra digits. We
immediately pushed for added intervention accepting what was
before us, declining several suggestions to sign a DNR. We
were going to do all we could for her just as we would for
any of our other typical children if they were stricken with
a severe illness. We began tackling each issue at a time,
we forged through the first year. One of the toughest
things in those early days was dealing with those
professionals who believed all they read on trisomy 13, an
“incompatible with life” diagnosis.
Most Professionals had never had a trisomy 13 child within
their practice, and a few had come across a trisomy within
their residency training. I can't even recall how many
times I was told she would probably not make it past the
first week, month, six months and year. I remember often
shaking my head, stating: “She is alive and she will be
treated, as any typical child would be for each specific
medical issue.” I felt like once we passed the year point,
we were looked at differently. She was now considered a
survivor. I feel very fortunate that we have Physician's in
our medical group that allowed us to have several surgeries
early on that helped with her survival.
The most important early intervention surgery was the
complete malrotation repair and g-tube insertion performed
at 6 weeks. Without that life saving procedure, my child
would not be with us today. She is a delightful child, a
unique child of God. A true blessing in our lives.
We had a wonderful Pediatrician the first year of life who
was an excellent support with all the needed specialist
referrals. This Pediatrician went out of her way to offer
personal and medical support. I will be forever greatful to
her for her professionalism and help in those early days.
One important point I would like to share (especially if any
professionals are reading this) my child unnecessarily
suffered during the first year and a half with severe
reflux and GI motility problems. I believe the GI Doc
initially tried, but eventually he also bought into the idea
that this is just the way these kids are. So for a year we
dealt with severe Esophagitis, Duodenitis & Colitis and many
motility and mucus issues. Trying a few different meds but
nothing seemed to work to help with the pain. I along with
many other trisomy parents are told, these kids are just
this way, they cry! I can absolutely say in our case, my
child suffered NOT because of the trisomy 13. No, she
suffered because of reflux and motility issues that were
eventually managed in ONE week after a GI switch, and change
in formula and medicines. There was a 200% change in her
demeanor, I’ll say it again in ONE week! I am a firm
believer in getting second opinions if medical issues are
not getting resolved in a reasonable amount of time. A
second opinion never hurts, and is allowed with most
insurance and state programs. Over the years we’ve had to
switch three time and in all cases, the medical issue in
question was resolved in a timely manner.
In Natalia’s first week of life I was approached by a women
who offered a “word of knowledge”. Believing we are all
given gifts of the Holy Spirit, I listened with discernment.
The words were very similar to this poem, but with the
added phrase, “she’ll never know sin”, I remember walking
away disappointed that with never knowing sin, my child
would likely die early or be so severely brain damaged it
would be unbearable. The shock of the first week and
dealing with the diagnosis – this was my new reality. Still
adjusting and accepting what was before me, I was not too
excited about this word of knowledge, actually was
disappointed. In the next month this same woman, sent this
written recap of her word of knowledge. This was long
before our prayer site, and this support site. Its
interesting to see how this journey with our sweet Natalia
seems to have been laid out, pre ordained, by our Heavenly
Just as in Psalm 139:13-16
"For you created my inmost being; you knit me together in
my mother's womb. I praise you because I am fearfully and
wonderfully made; your works are wonderful, I know that full
well. My frame was not hidden from you when I was made in
the secret place. When I was woven together in the depths of
the earth, your eyes saw my unformed body. All the days
ordained for me were written in your book before one of them
came to be."
Word of Knowledge we received for Natalia
This child is a child of God,
and born a full soul,
This child is guarded by
a Guardian Angel
who sees God
and intercedes directly
for the newborn life...
This child has come to sing
God's praises in ways given only to her.
You were chosen to be her family
for the gifts you bring to her.
May your family receive rich blessings
and many healings because of her.
Now that Natalia is 6 years I can reflect back as see that
our family has had many healings. Conversion to faith,
cancer healings and a medically unexplained healing of the
heart. I believe each life is unique and serves a great
purpose in Gods master plan. With faith, hope and love we
continue living each day, embracing every precious moment
God has given us. Loving each other as we continue on our
Natalia's PHOTO ALBUM
Medical Information and Genetic
Trisomy 13 Medical
Mom's Journal -
October 2007 Walking hand in
hand-possible bone infection (video)
2007 Back to the district
school and recap of our trisomy 13 journey.
Nov 2006 Update and Good News
July 2006 – First SOFT
June 2006 – Thank to SOFT and
Noah’s Never Ending Rainbow
May 2006 Blind Children’s
Learning Center Walk
April 2006 – Surgery Update,
brachial cleft cyst
April 2006 Upcoming Surgery
September 2005 Turning 5
February 2005 Happy Valentines
December 25, 2004 Year of
blessings, Cancer healing and Dad's Baptism.
November 2004 Natalia scoots
August 2004 Natalia turns four
mornings I am greeted with a loud Ma-Ma.
May 3, 2003
a foley with her G-tube which seems to work best for her.
Easter, April 25, 2003
Natalia could not get enough kisses from Jacob
February 9, 2002
had a wonderful week
August 25, 2001 Praise God,
with your prayers and love, Natalia turns ONE year!
May 21, 2001 Natalia is
giving us all a bit of a mystery
April 13, 2001 Natalia came
through her two procedures on Tuesday beautifully
April 9, 2001 Natalia will be
going in for a Colonoscopy and a Endoscopy
2, 2001 Natalia seems to be able to hear!
Mar 17, 2001 Natalia needs some
prayer power-she's so uncomfortable
Mar 7, 2001 Natalia was
an absolute Angel today
Feb 28, 2001 Natalia-our little
Feb. 5, 2001 doing well this week
Jan 26, 2001 is home
from the hospital
Jan 24 2001 Natalia is in the
Jan.12, 2001 Happy New Year
Dec. 26, 2000 God Bless You
Dec. 16, 2000 Wonderful
holiday surprises-Angels are everywhere!
Dec 2, 2000 Natalie is gaining weight & now wearing
Nov 7, 2000 Natalia's surgery
Nov. 4, 2000 Natalia has
another eye surgery on Monday
2000 Our little angel, Natalia, is aready two months
Oct. 21, 2000
Oct. 20 2000 Our little angel
is doing is doing well
Sept. 30, 2000 Natalia is one month- Thank God
Sept. 18, 2000 Good News for
Sept. 17, 2000 Natalia-our
Sep 14, 2000 Natalia-our
Sept. 11, 2000 Natalia-our
miracle in progress
Sept. 6, 2000 Natalia come
200 Natalia's Baptism
Crawley prays over Natalia in NICU - Natalia's Baptism
August 30 - Sep. 3, 2000