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

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Title: 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.

3
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.
4
Every baby can be screened
Each year, over 5,000 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.

6
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 child's health, from a financial
    perspective.
  • Looking to the Future - Prepare for changing
    doctors, navigating the school system, and being
    ready for emergencies.

8
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.

10
Thank You !
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