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Birth Defects
(Pattie)
We see happy images of and tend to hear about only healthy babies.
But many babies are born with problems called birth defects.
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.
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 counsellor.
Your doctor may be able to guide you to a social worker or psychologist in the area.
I have a friend who needed this help desperately. Her husband and her were fighting constantly.
They blamed each other. They were so scared, and felt alone. Even talking to someone who has been
through simular defects.
She often told me that seeking all information from books, tapes, the Library helped her
settle down a bit. They had to remember, All Birth Defects are not to mean Death.
She kept a notebook full of what she was learning, questions to ask the Specialists,
even questions to her husband. Every Resorce was a Blessing to her. Prayer, Oh how she prayed,
it seemed every moment of the day.
Money......Where would they find the funds for Special Care?
This is what I learned from her:
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 defects
Maternal blood screening to determine risk of chromosomal abnormalities
Amniocentesis and chorionic villi sampling
pre-conception counseling to help you understand what risks you might have 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.
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 outcome.
To get information on specific research about your child's disability, contact the national
organization for that disability. The March of Dimes and the National Information Center for Children
and Youth With Disabilities and the National Organization for Rare Disorders, Inc. (NORD)
also may have information about current research.
I am happy to say that my friend Mindy, and her husband Carl gave birth to an 8 pound baby girl
with Downs Syndrome. Why am I happy?
Hope is 5 years old now and growing like a weed. She has all the Special Care she needs through
her loving parents, who never gave up. She goes to a special school, has friends, and learns a little a
day, mostly about love.
 
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