We see happy images of and tend to hear about only healthy
babies. But many babies are born with problems called
. These are abnormalities of structure, function, or body chemistry
that will require medical or surgical care or could have some
effect on a child's development.
About 150,000 babies are born in the United States each year
with birth defects, according to the March of Dimes. There is a
wide range of birth defects, from mild to severe, and they can be
inherited or caused by something in the environment. In many cases,
the cause is unknown. Often, doctors can detect a birth defect when
they do prenatal tests.
If you've just found out that your child has a birth defect,
you're probably experiencing many emotions. Parents in your
situation often say that they feel overwhelmed and uncertain
whether they will be able to care for their child properly.
Fortunately, you aren't alone - with a little effort,
you'll find that there are lots of people and resources to help
As the parent of a child with a birth defect, it's important
for you to:
Acknowledge your emotions.
Parents of children with birth defects experience shock, denial,
grief, and even anger. Acknowledge your feelings and give yourself
permission to mourn the loss of the healthy child you thought
you'd have. Talk about your feelings with your spouse or
partner and with other family members. You might also consider
seeing a counselor. Your doctor may be able to guide you to a
social worker or psychologist in the area.
One of the best things you can do for yourself and your
child is to seek support.
Getting in touch with someone who's been through the same thing
can be helpful; ask your doctor or a social worker at your hospital
if they know any other parents in the area who have children with
the same condition. Joining a support group may also help - consult
your child's doctors or specialists for advice about finding a
local or national support group.
Celebrate your child.
Remember to let yourself enjoy your child the same way any parent
would - by cuddling or playing, watching for developmental
milestones (even if they're different from those in children
without birth defect), and sharing your joy with family
members and friends. Many parents of kids with birth defects wonder
if they should send out birth announcements. This is a personal
decision - the fact that your child has a health problem
doesn't mean you shouldn't be excited about the new
addition to your family.
Getting Help and Information
The amount each person would like to learn varies from parent to
parent, but try to educate yourself as much and as soon as you are
able. Start by asking your doctors lots of questions. Record the
answers as best as you can. If you're not satisfied with the
answers - or if a doctor is unable to answer your questions
thoroughly - don't be afraid to seek second opinions.
Additional places to get information include:
- books written for parents of children with birth defects
- national organizations such as the March of Dimes, the
National Information Center for Children and Youth With
Disabilities, or those representing a specific birth defect
- support groups or other parents
Keep a binder with a running list of questions and the answers
you find, as well as suggestions for further reading and any
materials your child's doctor gives you. In addition, keep an
updated list of all health care providers and their phone numbers,
as well as emergency numbers, so you're able to reach them
quickly and efficiently.
Part of this process of collecting information should involve
exploring options for paying for treatment and ongoing care for
your child. There may be extra medical and therapeutic costs
associated with caring for a child with a birth defect. In addition
to health insurance, many resources are available, including
nonprofit disability organizations, private foundations, Medicaid,
and state and local programs. One of the hospital social workers
should be able to help you learn more about these resources.
Seek early intervention.
Early intervention is usually the best strategy. Designed to bring
a team of experts together to assess your child's needs and
establish a program of treatment, early intervention services
include feeding support, identification of assistive technology
that may help your child, occupational therapy, physical therapy,
speech therapy, nutrition services, and social work services.
Besides identifying, evaluating, and treating your child's
needs, early intervention programs will:
- tell you where you can get information about the
- help you to learn how to care for your child at home
- help you determine your payment options and tell you where
you can find services for free
- help you make important decisions about your child's
- provide counseling to you and your family
Your child's doctor or a social worker at the hospital where
you gave birth should be able to connect you with the early
intervention program in your area.
Use a team approach.
Most children with birth defects require a team of professionals to
treat them. Even if your child needs to see only one specialist,
that person will need to coordinate care with your primary doctor.
Although some hospitals already have teams ready to deal with
problems such as heart defects, cleft lip and palate, or cerebral
palsy, you may find yourself having to serve as both the main point
of contact between the different care providers and the coordinator
of your child's appointments. As soon as you are able, get to
know the different team members. Make sure they know who else will
be caring for your child and that you intend to play a key
The Future of Birth Defects
Research into the environmental and genetic causes of birth
defects is ongoing. Technology contributes to understanding and
preventing defects in various ways - for example, prenatal testing
is growing increasingly sophisticated.
Safer and more accurate tests include:
- results of ultrasound tests and magnetic resonance imaging
(MRI), which are sometimes combined with information from blood
tests to determine the risk of having a child with certain birth
- maternal blood screening to determine risk of chromosomal
- amniocentesis and chorionic villi sampling
- pre-conception counseling to help you understand any risks
for having a child with a birth defect
Although none of these tests can prevent birth defects, they
give a clearer, safer, and more accurate diagnosis at an earlier
stage of pregnancy - giving parents more time to seek advice and
consider their options.
Genetics research is advancing quickly. The Human Genome Project
is working on identifying all of the genes in the human body,
including gene mutations that are associated with a high risk for
Early surgery is becoming an option in the treatment of some
birth defects - and can take place even while your child is still
in the womb. Surgeons now operate on fetuses to repair structural
defects, such as hernias of the diaphragm, spina bifida, and lung
malformations. These treatments can be controversial, however,
because they can cause premature labor. And it's still a bit
unclear as to whether they ultimately improve the final
To get information on specific research about your child's
disability, contact the national organization for that disability.
Also, the March of Dimes and the National Information Center for
Children and Youth With Disabilities and the National Organization
for Rare Disorders, Inc. (NORD) may have information about current
Louis Bartoshesky, MD, MPH
Date reviewed: April 2009
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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