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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org

In Loving Memory of This Treasured
Trisomy 13 Child

< Memories Page

Angel Gumataotao

Click here to send an update or photos

November 14, 2009 - stillborn

  Schertz, Texas (TX) - Full Trisomy 13 (holoprosencephaly, microcephaly, proboscis, polydactyly, kidney and heart defects)
 Military Family
 


Photos by: Jeanne Luna
from Now I Lay Me Down To Sleep

 
 
"As difficult and heartbreaking as this journey has been, I would not have gone through it any other way. I cannot imagine the regrets I would have been burdened with if we had decided to terminate when we were told of Angel's condition. Angel is a blessing; she has brought so much love and precious memories to our family."


Angel's Ultrasound Video  In Memory of Angel Gumataotao
This is a compilation of our beloved Angel's ultrasound video and just a few of her pictures. In her ultrasound video, you'll see Angel smiling, playing with her foot, puckering her lips to blow you Angel kisses, sucking her thumb and stretching. This video is so dear to our hearts because it is the only tangible memory we have of Angel when she was full of LIFE.

Here's a poem shared by a dear friend, who is a NICU nurse.

"These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part." - Unknown

I found the following poem online:

Angel
Our little Angel, we love you so.
We wish you wouldn't have had to go.
We got to hold you...touch your tiny hands and face.
How our hearts long for one last embrace.
Our time together was short, but the pain runs deep.
You looked so peaceful in our arms...
As if you were asleep.
Mommy and Daddy love you,
We would love to have you back.
But with God you must stay,
Until we are joined together at last.
Goodbye, for now, our Angel...until we meet again.
We love you and we miss you.
Slowly...our hearts will mend.
By: Jodi Anderson

November 30th, 2009 should have been Angel's day according to our plan. We should have been surrounded by other family members during my labor and delivery according to our plan. If everything went according to our plan, we could have had a healthy baby girl with us at home. But, we are not always granted our ways in God's plan. We followed our Faith and left everything in God's hands.

Our little Angel is in heaven now. Angel passed away in utero and I delivered her on November 14th at 3:18 AM. She weighed 4 lbs, 6.5 oz, and was 17.5 in long. We spent 17 unforgettable hours with her. I admit I was apprehensive to see her with the uncertainties of exactly how she has developed, but Angel was more beautiful than I had ever imagined. She had Daddy's full head of hair with two swirlies, light skin, and shapely legs, while she had my long fingers and feet. We couldn't help but marvel that her ears were exactly like her big sister's ears; her right ear was Daddy's and her left ear was Mommy's. She only had an extra finger on her left hand. Angel's big brother and sisters expressed their unconditional love, each having multiple opportunities to hold her and shower her with kisses.

Jeanne Luna from Now I Lay Me Down To Sleep captured many precious moments that we will treasure always, such as Angel's baptismal. Amy Beyer, the hospital Social Worker, was there to support us and also captured many precious memories of Angel, such as 3D moldings of her hands and feet.

It was so difficult to give her up, although I kept telling myself that her body was just a vessel and she was happy in heaven already. We held a beautiful funeral service on November 21st. I couldn't have asked for a more perfect day.

Through tears of joy and sadness, the first week after our little Angel's passing went too fast. It now seems like a distant memory when she was inside me, growing, thriving, giving me loving nudges, squirms, and tickles. I'm desperately trying to hold on to every precious moment I had with her. I hope to capture all the moments here and in a journal I started, as well as provide hope, faith and love to others who find themselves in this journey. As difficult and heartbreaking as this journey has been, I would not have gone through it any other way. I cannot imagine the regrets I would have been burdened with if we had decided to terminate when we were told of Angel's condition. Angel is a blessing; she has brought so much love and precious memories to our family.

I miss her so much! I would give and do anything to be able to hold her again. It is especially difficult with the holidays. I just remind myself that although she is no longer with us, Angel is blessed to be in the company of many heavenly friends and family members, and she will live in our hearts forever.

I will try to find a way to include Angel's ultrasound video. In the meantime, here are some pictures taken from the video. As you can see, Angel was very much alive and a real person playing with her foot, pursing her lips, and smiling.

Thank you for all of your continuing support, thoughts and prayers. You will always be in our prayers.

With Much Love,

Jane Gumataotao
jfgumataotao@gmail.com
"Some people only dream of angels; we held one in our arms."

 

Hello. My name is Jane. My husband, Frank, and I have three children, Keoni (14 years old), Chloe (11 years old), and Tasi (4 years old). We are currently stationed at Fort Sam Houston, TX. I am currently 32 weeks pregnant and my due date is December 1, 2009.

At 20 weeks during the normally scheduled ultrasound, my husband and I received the unexpected and heartbreaking news that no parent ever wants to hear, which are signs of abnormalities and that they are possibly fatal. It was a complete blow and such devastating news, especially when we were just expecting to find out the baby's gender. Sure we wanted to know if the baby was healthy, but that was at the back of our minds since we had three healthy babies.

The following day, we saw a specialist and based on the abnormalities, he suspected our baby girl, who we have named Angel, has Trisomy 13. We did an amnio that day and the results confirmed the doctor's initial diagnosis, further proving that our Little Angel has full Trisomy 13 (proboscis, polydactyly, brain, kidney and heart defects). Since then, I have been seeing the high-risk OB doctors at Wilford Hall at Lackland Air Force Base every two weeks. They have been wonderful and very supportive in every decision we make.

It has been quite an emotional roller coaster ride for all of us. But, we are embracing and enjoying every minute we have with our Little Angel.

We have had multiple ultrasounds to capture precious moments. We also had a 15 minute video recording of one ultrasound session that shows her smiling, sucking her thumb, puckering her lips, stretching, and grabbing hold of one her foot! I am excited to meet her, but at the same time, I wish I can keep her inside me where I know she is safe and thriving.

I am currently scheduled for an induction on November 30th. I know that day will be bittersweet. I hope we have some time with her before she returns to heaven. All I know now is that we have been blessed to have her in our lives.

Jane Gumataotao
jfgumataotao@gmail.com


 

 

Submitted 10-10-09

 

 
 


 
 

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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