F
3-20-10
OHHHH, our trisomy baby is most CERTAINLY worthy of life!!! I try so
hard to keep myself unattached to my patients but my trisomy baby (I'll call him
SM due to any HIPPA rights violations) SM has stolen my heart forever. He's such
a HAPPY baby. We got him when he was 3 months old. I was completely unfamiliar
with trisomy 13 when he came and scoured the internet for any information
available. SM has a cleft palate/lip. He has 6 fingers on each hand and 6 toes
on each foot. When he came we were told he was blind and deaf. Neither are true.
Both are within normal limits
He is fed through a g-tube. He's been
scheduled to have his cleft palate/lip fixed a few times but we have trouble
with his weight. We just found out his hypothalamus isn't working properly so
his blood sugar won't regulate and he has a hard time keeping weight on. He
grows like a WEED though. When we first learned of SM he was maybe a week or two
old. They said we "might" be getting him but he'd probably die. We waited and
waited, so excited to get such a young child. Months of waiting.
They
continued to tell us, even if we ended up with him, he wasn't going to live but
a month or two at most. Then, after we got him we were told he wouldn't make it
to a year. HE'D NEVER MAKE IT TO A YEAR! Our baby has surpassed that years and,
I promise you, he's the happiest baby alive. He has his favorite staff. He's
spoiled ROTTEN. He laughs ALL OF THE TIME.
If anyone deserves life, it's our
baby.
(a nurse who works in a long-term care facility for medically fragile
kids in the US). |
3-6-09
What a beautiful site!! I am a family physician also, studying for my ACLS
recertification, and I came across this statement in the Advanced Cardiac Life
Support Manual:
Withholding CPR (cardio-pulmonary resuscitation) for newborn infants
in the delivery room may be appropriate under circumstances such as the
following:
CONFIRMED GESTATION UNDER 23 WEEKS
BIRTH WEIGHT UNDER 400 GRAMS (1,000 gm = 2.200 lbs)
CONFIRMED ANENCEPHALY
CONFIRMED TRISOMY 13
OTHER CONGENITAL ABNORMALITIES INCOMPATIBLE WITH LIFE
Now, I had to see how "incompatible with life" Trisomy 13 actually was, and
found your site! As a pro-life physician I was overjoyed to find such love for
ALL children sent to earth by God to show US how life is really lived!
As for babies less than 400 gms, or less than 23 weeks gestation, check out:
February 19, 2007 06:09 PM Eastern Time MIAMI--(BUSINESS WIRE)-
World's Youngest 'Miracle Baby' Beats the Odds
Thank you for this site. I will use it for my patients to read as
pro-life/abortion situations arise. May God bless your work.
Elizabeth Phalen, MD
Clayton, NC |
12-1-08
Excellent!
I am a family doctor in Manassas, VA. My wife runs a charity called the House of
Mercy, which gives clothing and spiritual support to the poor. Two weeks ago a
young woman came through the door looking for a car seat as she was nearing the
end of her pregnancy. Yesterday at about 8 months of gestation, she went to the
health department for a prenatal visit (only her 3rd). Apparently she was pre-ecclamptic
and had an emergent C-section. The baby was born with many abnormalities and the
parents were told that she would die from Trisomy 13. I am not directly involved
in her care, but the parents called my wife for support.Not fully recalling
all of the details of Trisomy 13 and did a Google search. I stumbled upon your
site.
I want to applaud and thank you for the message of hope that you give. I am also
enlivened with the Pro Life message that you present. It is rare to see any
organization advocating carrying these babies to term in our culture. Lethal
mutation leads to abortion is the usual story. Giving these families support
when making the difficult choice to continue with a pregnancy with an uncertain
outcome is beautiful. The love and connection of holding a newborn, even if only
for a few minute, brings a joy and peace to the family that they would not have
realized if they had chosen to abort. They would be left then with only guilt
and pain.
May the Almighty God bless you in your work
Scott A Ross, MD |
I am a physician who has had experience caring for
little ones with trisomy 13 and other devastating birth defects. I have also
had the immense privilege of caring for babies who died shortly after birth. I
want you to know that NOBODY should ever tell ANYBODY that there is no hope. It
is deplorable for a physician to breath such words. To say there is no hope is
to say there is no God. There is a God in heaven who actively performs
miracles. Whether or not the miracle we are looking for is the miracle that we
see is a separate issue. I believe that I
have never seen the glory of God and the beauty of humanity more than through
the lives of these babies and children and their parents. Of course you as
parents of these sweet peas know that. I encourage you to find a new physician
if you ever again encounter one telling you that there is no hope. That is
simply a lie. Blessings to you. ~ Elizabeth H. Tichy, MD
San Antonio, TX
9-20-06 |
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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. |
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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.
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*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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