She dreamt of a perfect child from the day she conceived

Sister EvangelineThis was an emotional episode.  Jenny and Sister Evangelina assist at the birth of Ruby and Doug Roberts’ third child, their first son.  He is born with spina bifida (a neural tube defect, NTD), a birth defect of the spinal cord.  It’s Jenny’s first birth with a child that is disabled and she (like the family) struggles with the implications.

Spina bifida  happens in only 1-2 of every 1,000 live births.  This defect can impact the ability to stand, walk, and alter normal functions such as bowel and bladder function because of the disruption of signal flow between the brain and nerves below the level of the spinal cord defect.  You could see the defect on the back during the birth scene; it was at the base of the spinal cord and the neural elements protruded through an opening in the skin.

As a modern certified nurse midwife (CNM), this episode made me think of issues surrounding informed consent, decision making in regard to prenatal screening and options, and stigma that a woman and her family may experience.

Today we have the ability to screen for open NTDs (along with other disorders) and it is universally offered to women that receive prenatal care in the USA.  But we need to ensure that women have true informed consent.  I had flashbacks to situations that show a lack of informed consent.

For example, a relative who was offered prenatal testing declined the test.  At her next appointment she was told that they had done the test and that the result was within normal limits or negative.  Another situation arose with a friend who agreed to the test but did not fully understand what she was consenting to.  It returned an abnormal result and she was distraught.  She and her husband went in for counseling and decided against an amniocentesis.  The entire pregnancy she felt increased stress while she awaited the birth of her baby.  Her baby was born without any defects.   Finally, I once observed a clinic that tested women without explaining or obtaining consent.

Yes, prenatal screening should be universally OFFERED to women; however, research has been done that demonstrates that the making of several decisions is done in very short or limited time and is not based on every woman’s active decision-making.  This creates an ethical problem.  Exemplary care should be woman-oriented, individualized, developmentally and culturally sensitive, and allow for autonomy and a sense of control.  We need to empower women to make decisions about the type of care they desire and we need to address the understanding of information that is given to them.  Written information can be helpful, depending on their reading level, language, and  review time.  In 2009, a study was conducted at UCLA with 496 English and Spanish speaking women.  They were randomly assigned to either an interactive prenatal testing decision tool or a standard educational booklet.  The authors report that the interactive prenatal testing decision tool resulted in more informed prenatal genetic testing decisions.

Just like Jenny, we as midwives are always saddened when a woman struggles with challenges.  There is a grief process associated with loss–whether that loss is from a miscarriage or elective termination, or the loss of possibly your conceptualized dream with a genetic cause.  Women are strong and resilient, and as a nurse midwife I want to be there for the mother, father, and family.  We need to be present, engage, listen, and connect them with resources.

Some things that this show reinforced for me as a clinician and that I will emphasize with the women I serve and with my graduate students:

  • Approximately 50% of pregnancies are unplanned; therefore, each woman that I/we see for their annual exams should be considered as a potential pre-conceptual visit and educated about folic acid supplementation.  Folic acid is a vitamin that can help prevent birth defects. There are foods that are fortified or they can take it within a multivitamin supplement.
  • Practitioners need to know the individual patient as well as their population that they serve.  Caucasian and Hispanic women have a higher incidence of NTDs.  The CDC reports Hispanic mothers are almost twice as likely in the USA to have babies born with a NTD, yet they consume the least amount of folic acid.  It is the CNM’s job to help educate women.
  • I/We need to make sure that every woman understands the importance of their medical and family history and their partner’s family health history. This helps to identify diseases or conditions that might put someone at an increased risk.  With this knowledge, I/we can help identify changes that someone can make to decrease or reduce that risk (example with NTD is that there is a higher incidence with diabetes and seizure disorders).
  • Women deserve true informed consent!  We need to be able to describe the major kinds of prenatal screening and diagnostic techniques available.  With any procedure or test, women need to know the indications, options, benefits along with the risks or limitations, alternative choices, and the woman’s preference.

Here are some resources that may be of assistance:  

March of Dimes
http://www.marchofdimes.com/baby/birthdefects_spinabifida.html

Centers for Disease Control and Prevention (CDC)
http://www.cdc.gov/ncbddd/spinabifida/index.html

American Academy of Pediatrics
http://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Spina-Bifida.aspx

Spina Bifida Association
http://www.spinabifidaassociation.org/

National Council on Folic Acid
http://www.folicacidinfo.org/

ACNM Share with women: Making decisions about prenatal tests for birth defects
Download the PDF
1Kupperman et al (2009).  Computerized prenatal genetic testing decision-assisting tool: a randomized controlled trial.  Obstet Gynecol, 113(1), 53-63. 

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