Dear 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 condition.

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 serious condition.

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 again.
  • 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 memory after.
  • 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. 

CLICK HERE to order brochures for your office!

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.

 

Lethal Language Lethal Decisions

Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns

Moral Principles Concerning Infants with Anencephaly

Neonatal Management of Trisomy 18

Living with Triomsy 13- Health Professionals

Video: Therapeutic Abortion?

NCBC STATEMENT ON EARLY INDUCTION OF LABOR

Evidence Shows Abortion Is Hazardous To Women's Health

Living With Anthony

Compassion Deficit Disorder

Down Syndrome Association Video

Ethics & Patient Centered Care

My Child, My Gift

Invasive Tests Cause Two Healthy Children to Die by Miscarriage for Every Three Down Children Detected

A Sister's Perspective

Haunted by my Lost Son

Patrick Henry Hughes--The Music of Opportunity

When A Baby Dies

A Letter From A Mother To Her Doctors

Pediatrics Ethics Article

God Lives Under The Bed

One Extra Chromosome

Choosing The Road Less Traveled

The Role Of A Pediatric Ethics Committee In The Newborn Intensive Care Unit

Disability And Quality Of Life

Mary Pickles Charmed Everyone

Lethality Begets Lethality

Trisomy 13 Awareness Video

We Are The World Of Trisomy 13 & 18 (video)

Study: "The Experience of Families with Children with Trisomy 13 and 18 in Social Networks

A Doctor's Ministry, Bridging Science and Spirit

Dr. John Carey discusses routine health care for T-18

Kathleen Rose, T-13 Video