On the Problem of Pain
Wednesday, June 04, 2014
Two weeks ago a co-worker said
to me, as we were finishing up our nightly closing tasks, "I needed
to tell you something. I really respect the decision that you made to follow
your convictions and not have an abortion when your daughter was diagnosed with
her birth defects."
If this would have been the end
of the statement then we could have called it a night. I would have gone home
with the understanding that my Beatrix had impacted yet another life, and that
in the future he may have reacted in a positive way if faced with the same
situation.
But this was not the end of the
statement.
He continued.
"I don't agree with what
you did. I think it was (scientifically) wrong, but I respect you for doing
what you thought was right."
It baffles me that after almost
four years, I still find it necessary to defend the choice made. A choice that
wasn't just a personal preference, which I thought was above reproach in our
society of "choice", but which was the right choice.
Keep in mind- I never asked him
for his opinion. I didn't request his input on a life situation that occurred
during a time that I didn't even know him- nor was I looking for any validation
of my decision from him. He popped this statement up in the middle of
another conversation. No warning, no prelude.
Because I am accustomed to
people sharing their opinion about my (personal) decision, I had a number of
ready answers to his "scientific" objections to me allowing my
daughter to live.
I will tackle the three
responses that I gave to him. They are the three most common reasons why
abortion for fetal anomalies should remain available for all women, at any
point of gestation.
First, we need to be very clear-
terminating a pregnancy does not mitigate grief. In fact, some
studies have shown that terminating your pregnancy in this situation may make
grief feelings more intense- and surprisingly, we are now seeing that grief
intensity may be especially high in earlier term abortions. (1) (2)
(The inception of newer, earlier
testing may not be the boon that medical professionals are hoping that it will
be. The thought that earlier testing may provide better options for families,
in terms of ending a pregnancy "before you get attached," may not
bear out to be true.)
Traumatic grief has been shown
to accompany every
single post abortion experience in some studies, (3) (4) with women
requiring intense psychotherapy after said termination. (5) (6) (7)
You are not going to mitigate a
woman's grief by encouraging her to go through with a termination. In fact, you
may be causing more harm- more often than not maternal bonding has already
begun. A life with this baby has been imagined. Names may have already been
chosen. Mom may feel movements. (1) (8) (3)
In addition, women are often
pressured to terminate these types of pregnancies without being given
information about carrying their pregnancies to term. Studies have shown that
women who choose to terminate a pregnancy where a fetal anomaly has been shown,
will often do so within 72 hours of receiving a diagnosis. (9)
Physicians favor termination
over carrying to term for liability reasons- and will often pressure families
by stating that "time is running out", coercing them into make a
tremendously difficult decision before they have been able to gather and
process enough information to make a medically informed choice. (10) (11) (12)
Rarely are families given the
option of perinatal hospice or any information about choosing to continue their
pregnancy.
Overall, opinions which state
that a mother must be able to terminate out of concern for the emotional
well-being of the mother is based on our emotional response.
Studies show, quite definitively, that terminating a pregnancy for fetal
anomalies brings no relief to the mother involved and may possibly bring
harm.
The mother of an affected
child is losing a baby regardless of whether she interrupts her pregnancy or
not. By insinuating that termination is some type of cure you are also defining
her child as a sickness. It removes the humanity inherent in her baby- well, it
removes the humanity of the baby for everyone except for her. Because for her
this will always be her baby.
Medicalizing and throwing the
situation into the political pool won't bring her baby back- neither will
condemning her.
We can do better than this for
women.
Giving
women information about continuing a pregnancy after an adverse diagnosis is pro-woman.
Most of our emotion response to
exception laws are based on the issue of "force". While most people
understand that interrupting a pregnancy under these circumstances is
traumatic we assume that continuing a pregnancy under these circumstances must
be even more traumatic. Termination is seen as a necessary evil- the lesser of
two terrible outcomes.
The idea that "forcing
someone to carry to term a pregnancy with a poor diagnosis" is somehow
damaging is false-
Receiving a poor diagnosis
during pregnancy is damaging.
Period.
With either post-diagnosis
decision the risks of PTSD and severe depression are heightened.
Because of the relatively recent
advent of perinatal hospice programs, there are fewer studies of what the
outcomes of continuing these pregnancies are.
The studies that are coming
in, though, are quite telling. They solidify the idea that continuing a
pregnancy poses no additional risk for a mother who chooses to do so. In
fact- they are routinely showing the opposite. That mothers who continue their
pregnancies are faring better, emotionally speaking.
There is no denying that the
mother who chooses to continue her pregnancy after receiving a poor diagnosis
is at risk for a myriad number of psychological issues. Management of this type
of pregnancy requires a completely different and new set of standards.
(13)
There is no claim here that any
mother who chooses to continue her pregnancy will not suffer grief to the
degree that a woman who terminates her pregnancy does. However, carrying to
term is indeed making a positive difference in women's lives. Studies show that
as perinatal hospice programs grow in number, families who make the choice to
continue their pregnancies fare better. (14)
And
as programs grow and more parents are educated about the numerous options
available to them, early estimates show that 80-87% will make the choice to
continue their pregnancy. (15)
Once
the perinatal hospice model has been explained, and more often, once a
physician has addressed the issues involved with fetal pain parents are left to
do what comes naturally to them.
Parent
their children.
Create
a safe space for them.
Make
memories.
(And
make no mistake, while pro-choice advocates will claim that families are given
all options, the options given are slanted to make termination seem like the
only option. I wander through the rooms of post-loss carry to term moms. The
pressure to terminate is enormous.)
The after- affects of continuing
the pregnancy are beginning to show promise as well- with parents stating
clearly that continuing their pregnancy was a positive experience. (16)
In closing, all indications show
that in the future we will begin to see more evidence that continuing a
pregnancy in which a poor diagnosis has been received is a move in a positive
direction for women.
In addition, trends seem to
indicate that as more perinatal hospice programs become available, more
families will willingly choose to continue their pregnancies.
It is important that those who
are interested in the "pro-life" cause continue to grow in their
understanding of what "fetal anomaly" exceptions in laws entail, in
terms of the mental health of the mother involved, as well as the fetus.
We must begin looking past the
emotional responses that we all have to this subject, and see what study after
study shows- that termination for medical reasons (TFMR) is not the
compassionate choice that we believe it to be.
We must understand that
woman-centered care necessarily involves a perinatal hospice dynamic in place
of terminations, so that a woman carrying an affected baby can be encouraged to
continue her pregnancy to it's fruition.
Perinatal hospice is based on
available science-based medicine, not solely an emotional attachment or
religious conviction.
As
a mother who chose to continue a pregnancy in which a lethal anomaly was
diagnosed, and who was pressured to terminate throughout, I can say with
conviction that having knowledge of perinatal hospice before the end of my own
pregnancy would have resulted in a better outcome, emotionally. As it was, for
the majority of my pregnancy I received absolutely no support. I assumed that
women always terminated these types of pregnancies.
I
believed that I was an anomaly myself.
We
can do better than this for women.
(1) Seller M, Barnes C, Ross S,
Barby T, Cowmeadow P. Grief and mid-trimester fetal loss. Prenatal Diagnosis
1993;13:341-348, p. 344.
(8) Lorenzen J, Holzgreve W. Helping parents to grieve after second trimester termination of pregnancy for fetopathic reasons. Fetal Diagnosis and Therapy 1995 May-June;10(3):147-56, p. 154.; Kolker, op. cit.; and Seller, op. cit.15. Lorenzen, op. cit.
(9) Donnai P, Charles N, Harris R. Attitudes of patients after “genetic” termination of pregnancy. British Medical Journal 1981;282:621-622, p. 622.
(10) Rayburn WF, Laferla JJ. Mid-gestational abortion for medical or genetic indications. Clinics in Obstetrics and Gynaecology 1986:13-71-82, p. 72; Rothman, op. cit, p. 1194; and Blumberg BD, Golbus MS, Hanson KH. The psychological sequelae of abortion performed for a genetic indication. American Journal of Obstetrics and Gynecology 1975;122:799-808, p. 806.
(11) Drake H, Reid M, Marteau T. Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clinical Genetics 1996 March;49(3):134-40, p. 139.
(12) Feitshans IL. Legislating to preserve women’s autonomy during pregnancy. Medical Law (South Africa) 1995;14(5-6):397-412, p. 397.39. Mander, op. cit.
(13) Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. Chitty, LS, Barnes CA, Berry C. BMJ. 1996 Aug 24;313(7055):478-80.
(14) The Perinatal Hospice: Ploughing the Field of Natal Sorrow. Byron C. Calhoun M.D., Nathan Hoeldtke M.D. May 2000
(15) M. D’Almeida et al., Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition, J. AMER. PHYSICIANS & SURGEONS 11:52 (2006); B.C. Calhoun & N. Hoeldtke, The Perinatal Hospice: Ploughing the Field of Natal Sorrow (2005).
(16) Sumner 2001
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