When a couple is told there is a positive diagnosis for Down syndrome before a baby is born, it is very important for the physician to recognize the complex feelings that they have at this moment. Since the definitive diagnosis may also occur during the second trimester (though in the above case, it actually occurred in the first trimester), couples may have already developed ideas about what this particular baby will be like. A diagnosis of Down syndrome obviously alters that perception and leaves parents with conflicted emotions. Many couples will want to continue the pregnancy, no matter what, but may be afraid of what their future will bring. Others may believe that they will not be able to care for a child with Down syndrome, but are uncertain about specifics regarding termination. Still others may be torn about both options, knowing that their lives will be altered with any decision they make. Most will not know about adoption options.
Recognizing that physicians and other health care practitioners will have their own biases about what should be done, each medical provider (physicians, genetic counselors, nurses, physician assistants, etc.) needs to respond as a member of a coordinated team to individual patients in ways that reflect the patient’s values. Physicians should respond with empathy and concern as well as specific information. This type of conversation might include reference to new understandings about improved life outcomes for individuals with Down syndrome, such as their capacity to learn and become a contributing part of the larger community, and referral to local Down syndrome organizations. It also might include information on organizations devoted to adopting children with Down syndrome. However the physician or health care provider responds, the mother and father should feel understood, supported, and informed.
Your interactions with families such as this one will be remembered by them for the rest of their lives.
Thank you for taking the time to carefully consider your responses to these cases. We hope this module helps you as you assist other families in receiving this news.