As a part of a series on personal experiences of prenatal testing (see Why I Wish I Had Chosen Prenatal Testing and I Regretted My Amnio), in concert with my new ebook What Every Woman Needs to Know About Prenatal Testing, Nancy Iannone shares her experience today and advice for doctors on how to respect the varied wishes of patients who request prenatal testing:
When we were expecting our fourth daughter, my husband and I learned she had Down syndrome and a heart defect. I had previously told my health care providers I would not terminate, but one by one, four in all, they each separately told me I still had time to terminate. Although reeling from the news, the first termination offer did not bother me. But with each call, the impact was greater. Though none actually pressured me, the termination offers started to upset me, compounded by the grief of a diagnosis. I became self-conscious: did people think I was foolish for not “taking care” of this? Was I delusional about societal acceptance of disability?
Starting with the termination offers, and followed by some comments from others, the issue of termination become increasingly more painful and personal. I became uncharacteristically emotional about the topic. Resentful. Embarrassed. I also felt very foolish in some ways. Why didn’t I anticipate the offers? As a lawyer, intellectually I understood medical malpractice, wrongful birth litigation, medical ethics. Why couldn’t I just take it in stride, writing it off as each doctor just “making sure”? Or in the alternative, why wasn’t I more aggressive with preventing the offers? Should I have explicitly said, “Do not offer me termination. Please make sure you write it on the file, because I’ll be incredibly hurt”? These thoughts scurried around in my head, and exacerbated the raw emotions which are natural in post-diagnosis pregnancy.
Afterwards, I did not tell my doctors how I felt about the termination offers. My obstetrician, perinatologist, and cardiologist became rocks of support during my pregnancy, providing excellent, compassionate, and supportive co-care. Gabby’s birth was an amazing experience, with a party-like atmosphere and a joyous welcome at the hospital. We were incredibly grateful for these doctors, and very fortunate to have had them. They helped us through a difficult time. I thought telling them how I was hurt about repetitive termination offers would have seemed petty and ungrateful in light of all they had done.
Eight years have passed. I have supported hundreds of expectant parents since that time, most in post-diagnosis pregnancy. Medical care is a frequent topic of conversation. Experiences vary. Many so appreciate the care they receive post-diagnosis. Many are hurt. Some stories are inspiring, and some shocking.
The best stories, the best experiences, come from patients whose medical care providers understood their wishes and respected them. These providers temper their words and approach to be sensitive to the unique views and intentions of the patient in front of them.
Additionally, a provider who is familiar with audience-appropriate materials has the tools for support which respect the patient where they are in the process of decision-making and planning. The time period after a diagnosis is a whirlwind of emotions, and providers who anticipate the needs of these patients become a beacon in the storm.
If the patient’s intentions are not settled, all options must be covered due to legal concerns, practice guidelines, and medical ethics. This should be done in a non-directive, sensitive way, with balanced, accurate, and up-to-date information. If the patient’s intentions are clear from the outset, or when she later makes a decision, she will need resources specific to her path. The best resource for expectant parents receiving a diagnosis is the Kennedy Foundation’s diagnosis booklet, “Understanding a Down Syndrome Diagnosis.” This booklet handles termination so carefully that it respects patients whatever their mindset, and lists resources specific to continuing the pregnancy, adoption, and termination. Providers who become familiar with the listed resources are better prepared to discuss details with their patients. This booklet is viewable for free on-line, and providers may order a free printed version at Lettercase.org, part of the National Center for Prenatal and Postnatal Down Syndrome Resources.
A provider who knows the mindset of a patient in advance of a diagnosis is better able to approach the patient in ways that help rather than hinder emotional healing. The time after a diagnosis is difficult, but providers who are aware of their patients’ wishes and equipped with audience-appropriate materials have an opportunity to mitigate the emotional impact of diagnosis. Regardless of a patient’s path, she will know her health care providers are in her corner, respectful and supportive. She will also have much-needed resources at her fingertips to help her on her journey.
Eight years ago, there were tears, and fears, and a new social terrain to navigate, all without a baby to hold. After the initial diagnosis, our providers showed us they were behind us completely. Our providers’ support post-diagnosis helped us recover from the shock of the diagnosis and approach the newborn period on solid emotional ground. They were committed to the best start in life for our baby. They orchestrated plans so I could deliver at my local hospital with my chosen doctor, who said she would deliver the baby regardless of whether she was scheduled for work. They arranged a consultation with cardiac lactation consultants during the pregnancy, and a newborn echocardiogram in our hometown hospital. They set the tone for the delivery staff in the hospital, showing all medical personnel that this child was welcomed. Our obstetrician’s son, preparing for a medical career, was present, and forever changed by the experience. Most of all, when Gabby was born, they gave hugs, smiles, and congratulations freely and warmly, sharing and increasing our joy. The positive attitudes and interventions of our providers had a huge impact, and we are grateful.
Nancy McCrea Iannone has also been providing active support to expectant parents on Baby Center’s Down Syndrome Pregnancy discussion board since 2006. The story of her daughter’s birth is contained in Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (“A Hopeful Future”) and Gifts II: How People with Down Syndrome Enrich the World (“An Enlightening Snow Day”). Nancy is the co-author of the book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome and the booklet “Your Loved One is Having a Baby with Down Syndrome.” Both of these publications and additional resources can be found at DownSyndromePregnancy.org, part of the National Center for Prenatal and Postnatal Down Syndrome Resources.