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. 


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.

(2) Boss, op. cit.19. Kolker, op. cit.
(3) White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 71; and Zeanah CH., Dailey JV, Rosenblatt MJ, Saller, DN Jr. Do women grieve after terminating pregnancies cecause of fetal abnormalities? A controlled investigation. Obstetrics & Gynecology 1993;82:270-275, p. 275.

(4) Kolker, op. cit.; Rothman, op. cit.; and Black RB. A 1 and 6 month follow-up of prenatal diagnosis patients who lost pregnancies. Prenatal Diagnosis 1989;9:795-804, p. 801.

(5) Furlong RM, Black RB. Pregnancy termination for genetic indications: the impact on families. Social Work in Health Care 1984, Fall;10(1):17-34.
(6) Kolker, op. cit; Iles S, Gath D. Psychiatric outcome of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;232:407-13, p. 407.17. Blumberg, op. cit.

(7) A. Kersting et. al., "Psychological impact on women after second and third trimester termination of pregnancy due to fetal anomalies versus women after preterm birth--a 14-month follow-up study,"Archives of Women's Mental Health" 12:193-201 (2009). 

(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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