07/23/2009

Dear Patti,
I’m in my early 30s and pregnant for the first time. I was so excited and happy about becoming a mother, but after multiple ultrasounds I’ve now learned there’s an almost 90 percent chance my child will be born with severe deformities. I still can’t believe it. It’s like I’m in shock. I guess I thought I was young enough this would never happen to me. Mostly I feel numb, but there are times when I suddenly get a jolt of fear that runs all through my body and I can barely breathe. I’m terrified I’ll make the wrong decision.

It’s still early enough to terminate this pregnancy, but I’m very confused. My fiancé, family and even my friends all want me to have this child “no matter what.” They believe I should trust in God’s will and — while no one has come out and said it — they think it would be morally wrong to end my pregnancy. I hate to admit this, even to myself, but I’m honestly afraid I’m not up to the task of raising a child with mental or physical disabilities and I’m not sure it would be fair to my child. I feel intense pressure because I feel like I’m making a terrible mistake either way. What do you advise?

—Shannon

Dear Shannon ,
From the bottom of my heart I’m so very sorry you have to make such an agonizingly painful decision. This is a very sensitive subject for a lot of people and, regrettably, many will want to give you their opinion. Although the decision is ultimately yours to make, you’re likely to be told by others that you’re wrong no matter which option you choose. There’s also no escaping the fact you’ll be in and out of pain for quite some time. While you may want to share your feelings and emotions with those close to you, it’s a private matter and you and your fiancé don’t need to “report” to anyone.

I realize time is of the essence, so I highly recommend that you find a psychotherapist you can trust and who can help you face your true feelings. Shock is a defense mechanism against painful emotions, and often the crucial life decisions coming from such a stressful state are temporary, unstable and later regretted. While it’s understandable to look to your therapist for direction, it’s not his or her role to influence you concerning decisions as life-changing as this one but, rather, to guide you in seeking answers inside yourself and exploring all the complexities involved. Therapy will support you to be in the best mental state possible and coach you on communicating to loved ones.

I also believe it is imperative that you attend some counseling sessions with your fiancé. It’s an excruciatingly painful thing for both of you to learn something may be seriously wrong with your cherished unborn baby. While it’s lonely to feel misunderstood by friends and family, I’m most concerned about the closeness between you and your fiancé. Discuss your feelings and beliefs with one another. Listen completely and fully to each other, be open to each other’s point of view, and don’t lose sight of the need to be able to count on each other’s love and support in difficult times.

The more information you have about the defect’s severity, the better you’ll be able to make the right decision. To assist you, you may want to see a genetic counselor. Genetic counselors investigate and interpret data about the disorder, analyze inheritance patterns, risks of recurrence and review available testing options. Similar guidance and information resources are available from the March of Dimes and Genetic Alliance. If you’re not familiar with it, there’s also a wonderfully supportive Web site called “A Heartbreaking Choice,” where many other parents write about similar anguish and also participate in closed discussion boards related to catastrophic prenatal diagnosis. Talking to others who share your sorrow may make you feel less alone.