| March
12, 2004
Ms.
Elizabeth M. Duke
Administrator
Health Resources and Services Administration
5600 Fishers Lane
Rockville, Maryland 20857
Dear
Ms. Duke:
I
am seeking your assistance to make the
enclosed material available to the Advisory
Committee on Heritable Disorders and Genetic
Diseases in Newborns and Children.
The
information provided by Mrs. Teri Broadstreet
is about her experiences following the
birth of her daughter, Julie. This mother
alleges that the pediatricians were negligent
in the care of Julie and the lack of parental
resources compounded her frustration.
Julie had multiple abnormalities that
would have been recognized with an early
diagnosis identified in newborn screening.
Mrs.
Broadstreet would welcome the opportunity
to answer questions from a mother’s
perspective if the panel would find it
useful. She is well spoken and communicates
well. Her contact information is shown
on her correspondence.
Please
respond to our office in Washington, D.C.
Your questions may be directed to Mrs.
Jane Miller of my staff at (202) 225-3065.
Sincerely,
Howard
Coble
Member of Congress
HC:jm
Enclosure
Teri
D. Broadstreet
228 Dunwoody Ct.
Asheboro, NC 27203
Phone: (336)-672-1837
Email: sterlin30@hotmail.com
February
3, 2004
Howard
Coble
Member of Congress
2468 Rayburn Building
Washington, DC 20515
Re:
Neglect of Proper Medical Care
Dear
Mr. Coble,
I
am writing in reference to the neglectful
medical care my 6 year old daughter received
from birth, September 30, 1997, until
February of 2002, from a local physician.
Since being removed from their care, my
daughter has been diagnosed with an extremely
rare form of Trisomy 13 Genetic Syndrome,
“Mosaic Trisomy 13”. This
has brought along with it, enumerous disabilities
and abnormalities to include: Atrial Septal
Heart Defect, Duplicated Right Kidney
Collecting System, Global Sensory and
Behavioral Impairments, Polydactaly, and
Developmental Delays.
From
birth Julie presented with many physical
indicators symptomatic and inherent, not
only to her disorder, but to a Full Blown
Trisomy 13, as well s many commonly known
Genetic Syndromes. In addition, she was
at immediate High Risk, due to the fact
I was of advanced maternal age, turning
39 years old October 14, 1997. At birth
she presented as: Cyanotic, Required Resusitation,
Respiratory Distress, Nuchal Cord X2,
Transverse Simeon Palmer Creases, Polydactaly,
Microcephaly, Epicanthal Folds, Ventral
Hernia, Hemangiomas on her Forehead (with
an unexplained Knot and Bruising), Broad
Falt Nose, Small Slanted Close Set Eyes,
Lowset Ears, Thin Flat Upper Lip, Abnormal
Flexion in her Fingers, Couldn’t
Suckle, Very Weak Cry, Below Average Birth
Weight, an Undiagnosed Atrial Septal Heart
Defect, and her Undiagnosed Kidney Defect.
I am certain there must be other indicators
that as just an “Uneducated Mon”,
having to decipher the Medical Jargon
word by word, I haven’t determined
as yet.
Julie
was seen by Dr. Winters and Dr. Reedy
of Archdale Pediatrics, Archdale, NC from
birth until she was 5 years old. My family
expressed great concerns, even perfect
strangers approached me in department
stores stating, “She’s so
cute, does she have Downs syndrome?”
I entrusted my child’s complete
life and total care to these physicians.
Julie remained at and below 5th
% height and weight from birth. She continued
with eating issues (so vaguely recorded
in her medical records “baby doesn’t
like formula”), excruciatingly painful
constipation along with mysterious high
fevers blown off as viruses, that I attribute
now to her Kidney Disorder (presenting
the exact same symptoms), dysmorphic features,
motormental retardation, turning blue
to the point of passing out when crying
(Dr. Winters laughed off, telling me she
hyperventilated, also stating her skin
tones were just going to have blue undertones
because she was a redhead), major eye
issues (her first prescription was 6.5),
developmental and behavioral issues etc.
. . Despite my many concerns, these physicians
diagnosed her as completely normal, never
interveining or referring her to higher
levels of medical care such that major
medical centers like Brenner’s Children’s
Hospital. Wake Forest Babtist Medical
Center, or Duke University can offer,
disregarding every single one of my concerns.
I’ve since discovered there was
chatter amongst themselves, never in my
presence, along with questionable xrays
made the day Julie was born, with much
vaugness, and many discrepancies in her
medical records. How these physicians
were totally and absolutely negligent
in my child’s care is appalling
and completely departs from acceptable
and prevailing medical practices. I will
establish their negligent treatment produced
an extremely precarious safety risk, for
my daughter’s health and life, much
greater than any prevailing treatment
they should have provided.
I
sought outside intervention through the
Randolph County Health Department whose
Nurse, Wendy Boggs RN, immediately observed
dysmorphic features, as well as abnormalities
in Julie’s eating, gait, eyes, behaviors,
delays etc. . . She immediately reffered
her for evaluations at Developmental Evaluation
Center in Greensboro, NC and to an ophthalmologist.
Dr. Ted Anderson at DEC, also, immediately
observed her differences and reffered
her for genetic testing. This resulted
in her initial diagnoses of “Mosaic
Trisomy 13 since birth. As a result,
because of High Risk with Trisomy 13,
Julie was refered for further testing
of her Brain, Heart, and Kidneys, where
I also, initially discovered her Atrial
Septal Heart Defect and Kidney disorder.
Julie was 5 years old. As her health
continued spiraling downward I requested
all of my daughters care to be transferred
to Wake Forest Babtist Medical Center.
Here, I thank, Dr. Joel Hutcheson Pediatric
Urologist for giving my child the Gift
of Life. He performed a Reimplantation
of all of Julie’s Ureathera’s,.
after discovering she had become resistant
to 9 different antibiotics and developed
an E-coli Infection, then a major Staff
Infection due to her Kidney disorder.
Urine was improperly routed, causing pooling
and stagnating in her body since Birth.
By the Grace if God, Dr. Hutcheson didn’t
find as much kidney damage as he had expected
to find in a child that had been neglected
for so long. Had this precarious, negligent,
treatment continued Julie’s kidneys
would have shut down and she would have
died. I am horrified in knowing, had
my child died during these physicians
care, Archdale Pediatrics, from birth
until 5 years old, I would never have
known the truth, as I suspect has happened
to many families past, and ongoing (SIDS
I suspect in my cases for example). Although
we face many other issues, for the first
time ever, Julie is currently symptom
free, medicine free, and pain free, beginning
to grow and thrive. She is an absolute
joy and miracle child, despite her odds.
A child born with a Full Blown Trisomy
13, if she survives to become full term,
85% of these babies, do not survive 6
months old. Prognosis for Julie is unknown.
I
feel my child has not been rendered proper
evaluations, treatments, services, and
habilitations due to the fact I must use
the Medicaid System to fund her medical
care, and, these physicians saw my child
as a lost cause with no hope. With malice,
on Julie’s last visit to Archdale
Pediatrics, Dr. Reedy beligerantly told
me I was wasting my time, she didn’t
need genetic testing, didn’t have
a hernia, she was oppositional defiant
and ADHD, there was no hope for my child,
and, to be honest she had more problems
than he knew what to do for. I threatened
him that Wendy Boggs, RN for the Health
Department would go over their heads if
necessary as she had told me she would
do so if she had to. At this point he
angrily told me I would get them in the
mail, and again I was wasting my time,
as he slithered out the door. Dr. Chamberlain,
Julie’s current pediatrician, upon
first glance of her medical records, stated,
quote “If I were you, I would be
madder than hell!” Dr. Anderson
DEC, and Dr. Jewitt, Geneticist, WFU have
also stated they don’t understand
how this happens time and again. I have
discovered a whole society of families
silently suffering as mine has through
Networking and Support Groups. In addition,
I’ve discovered a, “silent
conspiracy”, amongst physicians,
covering each others tracks. As the parent
of a precious little one, we endure enough
pain and dejection at the loss of our
dreams for our children. Small milestones
become great triumphs.
I
am seeking your assistance to present
a bill to Congress to mandate more extensive
evaluations of especially High Risk newborns.
This disgusting, negligent practice must
be stopped. Doctors must not be allowed
to so arrogantly play “God”,
with our innocent children’s lives.
They must be made accountable to someone.
I can find no laws to protect our children.
A simple blood test at birth would prevent
must needless pain and suffering, but,
ultimately death.
I
would appreciate an expedited reply on
this matter. Thank you for your time
and interest.
Sincerely,
Teri
D. Broadstreet
“Just A Mom”
Supporting Medical documentation and photos
enclosed.
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