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Many people have expressed an interest in doing something
so all newborns can be screened for FODs, but they don't
always know what to do or where to start. I've been working on this
cause for a year, and I'd like to share plenty of ideas.
There is no greater power to induce change than personal
testimony that touches peoples' hearts. My experience has been that
most people are more willing to talk than they are to read. When
you can, it is better to call than it is to write. At least
that has been my experience.
I suggest the following:
- Contact Save Babies Through Screening
(formerly Tyler for Life Foundation) toll free (888) 454-3383.
Their MAIN mission is to advocate Newborn Screening for over 30
different metabolic disorders, including FODs.
- Various pediatric practices, including
large ones. They need to inform parents that screening exists!
- Visit www.junkscience.com/database/medrpt.htm
or call me for the info. There are 10 pages of medical reporters
and their phone numbers across the country. Start calling! Everyone
cares about newborns.
- Cal Thomas, a syndicated columnist
who takes up miscellaneous causes
- Marilyn Brooks, a syndicated columnist
who does medical stories at www.WTAE-TV.com,
an ABC station.
- Robert Bazell, at NBC, a medical
reporter
- Don Imus at imus@MSNBC.com,
who does a morning show on MSNBC. He raises money for kids with
cystic fibrosis. I've written him asking him to raise AWARENESS
of FODs and the NBS available.
- Melinda Gates at info@gatesfoundation.org,
who runs the charitable foundation with husband, Bill Gates. I'd
make a plea for ALL babies to be tested at birth. What's $20 per
baby to the Gates Foundation?
-
Reye's Syndrome organization, SIDS organization at http://sids-network.org,
National Center for Education in Maternal and Child Health in
VA at info@nce.mch.org and
the US National Library of Medicine at www.nlm.nih.gov
(deals with diagnosis and treatment of specific disorders) in
Bethesda, MD. These organizations have been contacted by the FOD
Group but it helps to constantly remind these people that we FOD
people COUNT and have VALUABLE INFORMATION they need to LISTEN
TO and LISTEN TO OFTEN! (Note from Deb: Some of these web
sites/organizations do not even acknowledge genetic metabolic
disorders, such as the FODs, as a "differential diagnosis" ~ even
though FOD experts estimate that 10% of RS cases and 3-5% of
SIDS cases are ACTUALLY an FOD!)
- Read about SIDS and RS, and send
info about FODs to the authors. They should expand their writings,
and they will if given the info often enough.
- Early Intervention programs or Zero to Three
at www.zerotothree.org
a nonprofit health organization that professes stressing good
health for children 3 and under. This is about the time many of
the FODs strike.
- Nursery schools, daycares and elementary schools.
Teachers should forward your info to parents.
- Have school children raise awareness
by creating a public interest program through their school. Children
are often imaginative and what better cause than FOD screening?
A school in VA created an MCAD Awareness Day!
- Childbirth education classes, including the main
organization, Lamaze International at Lamaze@gbs.dc.com
in Washington, D.C. Let's have them advise newborn screening and
proper feeding during the first few days of life, so that unsuspecting
parents can have knowledge and prevent unnecessary heartache.
- Malpractice lawyers who represent hospitals.
Contact me - I'll get a listing of these lawyers in any area you
want. In your communications, I'd use the Hershey Medical Center
case in PA as an example. Presently, I know of 5 such cases in
various states.
- Churches. They see expectant couples
and babies all the time.
- Network with pharmacists. They may
know parents with babies and may advise them of the testing.
- Celebrities, including small time ones
such as soap opera stars. They may actually read their mail.
- Ann Landers, Dear Abby
- YWCA at www.ywca.org/html/B8d.asp
- YMCA at www.ymca.net/presrm/press_con.htm
- Planned Parenthood at www.plannedparenthood.org
and other midwives. Midwives often like to take interest
in patients that doctors often won't.
- Prevention magazine at www.itsallaboutprevention.com
does a lot of preventative-type articles. Newborn screening applies
here.
- Pay attention to junk mail. Sometimes you'll
receive mailings from charitable organizations with an interest
in childcare, or from women's health organizations. It wouldn't
hurt to give them some info.
- Pay attention to circulations from children's
stores. Toys R Us, for example, has a publication called
'the University for Parents.' They run articles of interest for
parents. Maybe they'll run yours!
- Insurance companies. The 4-page yellow
insert (FOD
Cost Benefit Analysis Survey (PDF*), from the July 1999 newsletter,
shows it is more economical to screen babies at birth than it
is to do nothing and let them get sick. Insurance companies will
only listen to bottom-line dollars. This is best handled by a
contact with someone inside an insurance company. Other websites
showing cost benefits are listed on the Save Babies Through Screening
website.
-
www.ivillage.com an information resource for parents and women,
and similar sites. Let's educate them!
The following are suggestions for the breastfeeding
issue. FOD babies fast the first few days of life before mother's
milk comes in, if they are EXCLUSIVELY breastfed and NOT supplemented.
Newborn screening may not help these babies because test results
take at least a few days to come back; parents need to be advised
to supplement in the first place with sugar water or formula.
- American Academy of Pediatrics. They have
a policy dated December 1997 that advises breastfeeding EXCLUSIVELY
and NOT supplementing. This policy can be LIFE-THREATENING and
brain damaging to the @400 babies born each year in the US with
FODs. This policy can also be harmful to the 200 babies born each
year in the US with MSUD (maple syrup urine disease), citrullinemia,
acute neonatal, argininosuccinic aciduria. A pediatric metabolic
doctor can verify this. AAP needs to change their policy so that
it HELPS babies and doesn't HURT them!
- The nursery committee in hospitals.
They need to be educated on newborn screening and on breastfeeding.
- Childbirth education classes, including
the main organization, Lamaze International in Washington, D.C.
They follow current AAP policies so they need education.
- Various breastfeeding organizations.
Perhaps the hospital's nursery committees can refer you to such
organizations.
Above all, I stress doing SOMETHING. People
like to give you the impression that "you can't do anything." This
is untrue—if that were true, no child would be screened today
for PKU. Obviously you CAN do LOTS of THINGS. For more information
about advocating newborn screening together, please visit Save Babies
Through Screening or call toll free (888) 454-3383.
Wendy Nawn MCAD Mom
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