Is knowing potential problems in pregnancy more helpful or harmful for the mother?

Helpful

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by Beth Nicastro

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I believe in my heart that knowing a prenatal diagnosis can shake a mother to her core but also help prepare her for the reality that she needs to live with.

As a nurse for 20 years, I have seen many babies born healthy and with defects of many levels. Caring for oneself and your new baby takes enormous energy, patience and knowledge. If a mother is diagnosed, for example, with a congenital problem at the 18-20 week ultrasound, she and her partner need information and referrals about the choices they have. Shock, numbness, anger and fear are common reactions after hearing such overwhelming news. If the outcome is fatal, the family needs the opportunity to grieve the potential loss and even celebrate the present life. Not knowing of a problem could mislead the family and create false hope. By knowing, every minute of pregnancy can be genuinely appreciated.

A couple's act of creation may result in a healthy baby boy or girl or a beautiful child with problems. Having ultrasounds and triple marker screens provide information to women about their pregnancy. Oftentimes the parents will question their own values and beliefs after receiving a troubling diagnosis and are then forced to make a choice. Years ago parents did not have the medical technology and problems were not detected until after birth. Sadly, many parents' needs to grieve and cope were not addressed properly. Although far from perfect the situation for devastated parents is improving today with bereavement programs and perinatal hospices.

Yes, dreams can be shattered and the parents may feel robbed and devastated. Amidst this emotional turmoil the mother cannot neglect her physical needs. Furthermore her emotional needs will be even greater. The mother must rely on her present coping skills or learn new ones. Support systems can take a variety of forms. Couple counseling can be highly beneficial when faced with a fatal or uncertain prenatal diagnosis. In addition, family, friends, and support groups may prove invaluable. When I was told of my daughter's diagnosis of anencephaly at 20 weeks, I received close monitoring by my obstetrician including weekly ultrasounds. This was done for medical reasons but seeing her on the screen helped foster a closer bond to her. Also I was instructed to monitor her movements and listened to her fetal heart rate daily. This was a very precious time that I spent bonding with my daughter.
I sensed her presence and life within me. This first pregnancy was a bittersweet but beautiful time. Not one kick or squirm was taken for granted.

I was also referred to the perinatal bereavement program at our local hospital. From there I was connected with another mother who suffered a similar loss. Speaking to my new friend lessened my feelings of lonliness and put some of my feelings into perspective. We also received spiritual counseling from the hospital chaplain. The perinatal hospice nurse helped us write a birth plan and we met with the neonatologists. Consequently, most parents need multiple sources of support in their community during this lonely and fearful time.

My husband and I spent hours discussing our situation and the moral, ethical and emotional perspectives surrounding our precious baby's life. We sought a second medical opinion and received the same diagnosis of anencephaly. Anencephaly is the incomplete closure of the neural tube between the third and fourth week of embryological development.It is the most severe form of a neural tube defect and occurs in 1 out of 1000 live births in the United States. The brain does not develop and the skull does not close completely. This condition is incompatible with life. Imagine being told that your daughter could die in utero, be stillborn or possibly live for a few hours or weeks! After a prenatal diagnosis of anencephaly,the physician informed us of our choices: termination, early induction or carrying the pregnancy to term. We were forced into a journey of grieving and helplessness.

Nonethe less, we embraced the joy and pain and decided to carry Isabella Grace to term. We always knew that since we were loving parents, we wanted to cherish every moment with her and became a family of three.

Overall, I believe knowing a potential problem is more helpful in this situation, however, painful it may be. Learning about risks,tests and options will prove helpful in decisions about future pregnancies. For us, by knowing early in the pregnancy we were given the opportunity to grieve for our precious baby but also to cherish every minute of her life in utero. Our faith has strengthened and bonds of marriage tightened even more. We have never regretted our choice and will always feel intense pride and eternal love for her. This challenging journey was one of love and strength that paved the path for peace and healing.

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