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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 be.

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.

ThereseAnn

1-20-07

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 her full
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

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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 Father.
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,
completely formed...
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.
Amen.

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 journey home.