I was twenty nine years old and we found out that we were having our first child.
She arrived beautiful as can be full head of black hair
and were both just crying with tears of joy
meeting her for the first time.
We brought her home
thinking everything was okay.
She gained enough weight to where she was growing out of
one set of... size clothes.
So she was healthy;
we thought she was healthy.
i went to target one day, we came home
and i was holding her in her room
and she made this sound
that didn't sound right to me
when i looked at her she felt limp in my arms and that's when i knew
things aren't ok.
I saw labored breathing
and I immediately started CPR and called 911.
The ambulance arrived and they just grabbed her
and just ran to the ambulance. I just remember the number four so let's
start ruling it out. Do all the tests you can rule out seizure disorder do
all the tests
for the metabolic disorders
what what did i do wrong? How do I not know that my child was so sick?
That same night around eleven o'clock the doctor said we need to sit down and
talk
she has a heart defect. And nobody
talked me about screening, nobody gave me the option, nobody told me was that most
common defect
otherwise
i would have taken that risk to take her home without her being tested.
She stopped breathing for long enough to
cause significant brain damage.
She was struggling
even though she was intubated and they were breathing for her.
They kept running tests
and i just remember hearing... sitting beside her
wanting to hold her
and hearing the machines go off.
Because you know
something was wrong, something what was wrong to alert the machines
to alert the nurses and doctors.
and we went to that all,
all night long.
We held her when she took her last breath.
And I remember kissing her
on her jet black hair.
We left the hospital
what the car seat, and it was empty.
I'm a neonatologistat University of Texas Health Science Center at San Antonio
I'm here to tell you about a new newborn screen that is done on apparently
healthy babies. It involves at the use of pulse oximetry. If we find out a low
reading on the pulse oximiter
then the baby is refered to get diagnosis.
uh... with diagnosis we may be able to pick up a group of conditions called
critical congenital heart diseases.
You've heard V. Kennedy's heartbreaking story about her daughter
Taryn
who died of an unidentified total anonymous pulmonary venus return
TAPBR.
A critical congenital heart disease that could have been found through screening.
Although the information about the screening was not available at the time of Taryn's birth.
Screening should be done after twenty four hours of a newborn's life.
Because if this screening we recently found and apparently healthy newborn
before discharge with the same life-threatening condition.
Mrs. Varale's baby Abe was able to have corrective surgery before discharge from
hospital and he's doing fine now.
I would say to all moms out there
before bringing your baby home
after they've
been born for twenty four hours ask
the hospital ask your pediatrician
I want pulse ox on my baby
and I want you to follow the rules set by the American Academy of Pediatrics along
with the American Heart Association.