Newborn Screening | Infant Care | Health Care | Baby's First Test

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http//www.babysfirsttest.org
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About Newborn Screening

• Newborn Screening Facts - A brief introduction to
  the most important information on newborn
  screening.
• Genetics and Family History - Information on why
  it is important for all babies to have newborn
  screening even if there isnt a family history
  of a condition and how genetic conditions are
  inherited.
• Screening Resources - A brief description and
  links to several government and non-profit
  agencies working to improve health through
  newborn screening.
• Conditions Screened by State - Every state has
  slightly different requirements for newborn
  screening. This section reviews factors that
  influence how states choose their screening
  panels and how to find out more information.

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What to Expect
Newborn screening is just one of many things that
happen in the first few days after a baby is
born. The following information will help prepare
expecting parents for the newborn screening
process and answer common questions. Links to
resources are also provided for a more in-depth
look into the newborn screening process.
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Every baby can be screened
Each year over 5000 babies are born with one of
the conditions included in state newborn
screening panels. Most of these infants appear
perfectly healthy at birth and come from families
with no history of the disorder. Unfortunately
once symptoms appear they are often
irreversible leading to severe health and
developmental problems or even death. Every baby
born in the United States is required by law to
undergo newborn screening prior to leaving the
hospital because it is the only way to tell if a
seemingly healthy infant has one of these rare
but serious conditions. Most affected babies
identified through newborn screening who receive
treatment early grow up healthy with normal
development.
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Newborn Screening Process

• Before Birth - Seven things parents want to know
  about newborn screening.
• Screening Procedures - The who what when
  where why and how of newborn screening.
• Responding to Results - Questions to ask a babys
  doctor if a baby receives an out-of-range newborn
  screening result.
• Screening Outcomes - Information on possible
  results from newborn screening and what to do
  next.
• What Happens to the Blood Sample - An overview of
  what happens to the remaining blood sample taken
  during newborn screening.

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Living with Conditions
Learning through newborn screening that your
child has a rare health condition can feel
overwhelming. In most cases no other member of
your family has had this condition. You may not
know where to begin looking for information.
After you work with your childs doctor to
determine a care plan you may want to begin
thinking about what it means to have a child
living with this condition both now and in the
future. The information in this section can
provide resources support and guidance for
families as they begin this process. Take a look
around. We look forward to adding your story and
experiences to the many voices found here.
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Living with Conditions

• Family Experiences - Learn from other families
  in their own words what their journey has been
  like after a diagnosis.
• Talking About a Diagnosis - Find tips for sharing
  information about the diagnosis of your child and
  things to consider prior to sharing.
• Advocacy and Support Groups - Connect with others
  to share stories encourage each other and
  advocate for a better future for all children.
• Find a Specialist - Get links to find specialists
  for your childs medical needs.
• Insurance and Planning - Access important
  resources and read about things to consider in
  terms of your childs health from a financial
  perspective.
• Looking to the Future - Prepare for changing
  doctors navigating the school system and being
  ready for emergencies.

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Health Professionals
Health care professionals are often the first and
most trusted resources for information and
answers about newborn screening. There are many
different kinds of health care professionals who
serve families in the pregnancy planning
pregnancy and postpartum periods obstetricians
and gynecologists (OB/GYNs) nurses childbirth
educators doulas midwives pediatricians
family physicians and more. All can serve as
resources for questions about newborn screening.
This section provides up-to-date and relevant
information on some of the most commonly asked
issues surrounding newborn screening so health
care professionals can be prepared to answer
questions from their patients and clients.
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Health Professionals

• Prenatal Health Care Providers- Information
  tailored for prenatal providers on topics such as
  how to talk to expectant parents about newborn
  screening and what common questions parents have
  prior to screening.
• Pediatric Health Care Providers- Links to ACMG
  ACT sheets for conditions included in newborn
  screening confirmatory testing algorithms for
  positive screening results and a checklist of
  basics to cover with parents whose baby has
  received a positive screening result.
• Dried Blood Spot Storage and Use- A review of
  common questions asked about dried blood spot
  storage and usage as well as links to
  state-specific information.

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Thank You !