Physicians and Medical Professionals
When a woman’s
dream to have a healthy baby is shattered it can be
devastating. Early prenatal testing makes it easier
than ever before to detect abnormalities in the unborn
child. As a doctor, you are the first to learn of potential
adverse diagnosis and the first to communicate this
to the parents. As a parent, it is never easy to hear
that our unborn child could have a disability or a fatal
A doctor can have
a great deal of influence during this very difficult
time. Therefore, it is very important to provide your
patient with accurate, up-to-date information regarding
the child’s diagnosis and prognosis while remembering
that this child, although not yet born, is a loved and
valued member of the family. Include statistics and
as much information as you have on the child’s
condition, but remind them that some babies do defy
the odds, and sometimes there are exceptions to the
norm. Let your patient know that even if the worst-case-scenario
does happen, right now her child is alive and his life
has as much value and meaning as any other child’s.
As a physician
or medical professional, you may be required to present
your patient with all options, including abortion. Frequently,
however, we hear that not all options were presented.
Many times women feel as though they had no other choice
but to terminate their pregnancy based upon the information
that was presented to them by their doctor. A patient
who has just received “bad news” regarding
her child is generally not in a mental position to make
an informed decision. Although time may be an issue
for some, uninformed decisions can scar the patient
and her family for the rest of their lives. So
many times women feel rushed into making a major decision
depending on how far along they are and the abortion
laws in their particular state. They did not know that
they could continue to love their child until his or
her natural death. Parents need to be given the choice
to continue their pregnancy.
Let the patient
know that they can continue to love and embrace their
child’s life no matter how short it may be. Inform
them of our support group—and others locally and
nationally. If you know of a prior patient who has had
a child with a similar diagnosis who is willing to meet
with your patient, assist them in finding that support.
Ask her how she would like to continue with prenatal
care, assuming that she would want the same care as
any other patient with pregnancy-related complications.
When a woman chooses life for her child, she and her
child deserve the respect and dignity that would
be given to any other person.
Assist your patient in identifying and achieving their
goals for their child. A patient who is carrying a child
with a condition which is truly fatal may want to do
everything possible to meet her child alive. While you
cannot change the child’s condition, you can provide
extensive monitoring (weeklyBPPand non-stress tests)
and assistance in finding referrals if the family is
seeking treatment for the child.
It is more important than ever that we unite in giving
good advice and support to these couples whose babies
are diagnosed in the womb with a life-threatening or
Based on our collective
experience and expertise, we feel compelled to give
some additional advice on what to say (or not to say)
that may be helpful. These suggestions were offered
by parents who were given a negative prenatal diagnosis:
- Don’t be afraid to
offer hope. Parents need to hear clear, accurate information—not
just the worst case scenario. One pregnant woman who
was given an adverse diagnosis asked the doctors why
they told her only negative information. They replied
they did not want to give her false hope. There is
no such thing as false hope! Often hope, faith and
love are all that keeps parents going in these extremely
stressful situations. Even if their child dies, there
is for many the belief that they will see their child
- Don’t be afraid to
look past the diagnosis and see a child that is loved
and wanted. When asked what the hardest part of the
experience of receiving an adverse diagnosis was,
one mother said it was the way the medical professionals
saw only the diagnosis—not her baby that she
loved and wanted. There is always something positive
one can say about the baby to make sure parents know
their child is valued.
- Don’t rush parents
into making decisions that will have life-long consequences
for their families. You will move on to your next
patient, but the family has to live with their decision
for the rest of their lives. When one family received
an adverse diagnosis after birth, they were counseled
to not offer any care but comfort care. They felt
pressured to let their child die and needed time to
pray and seek the advice of others.
- Many couples are waiting
to adopt one of these special babies. Let the couple
know if it is too difficult for them to care for their
child after birth, a referral can be made to a crisis
pregnancy center to help find a good home for their
special needs child.
- Don’t lead parents
with scare tactics. Clear, honest, complete information
offered in a compassionate, non-judgmental manner
is what parents need most and will appreciate. One
doctor told a mother that if she treated her baby,
she would never leave the house—and she would
be forever chained to her special needs baby. She
was asked, “Do you really want to be changing
diapers 20 years from now?” Parents need loving
support, not fear and scare tactics. There is
a difference between medical facts and quality of
life values, and parents are the only ones who should
be making these decisions.
- Be open to a c-section if
it will optimize the chances of the parents meeting
their child alive or could at all contribute to a
more positive outcome for the child.
- Pray with your patients
if you feel called to. For many, it is such a comfort.
One mom remembers her doctor taking her hands and
saying, “May I say a prayer for you?”
It was a great comfort at the time and a beautiful
- Call the child by name if
the parents have chosen one. It shows you see their
baby as a real person and not just a diagnosis.
- Be patient and give parents
time to process the information. Parents are often
in shock and tremendous pain when they are told of
an adverse diagnosis. For many, this is the most difficult
time of the whole experience. Sincere compassion and
a gentle attitude are so helpful to parents at this
time. One mom remembers her doctor saying, “I
will be here for you and your baby throughout this
pregnancy.” It gave the mother comfort knowing
she could count on her doctor.
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The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.