Published on in CHOP News
By Rev. Laura Palmer, Chaplain, Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment
Learning that your baby has a life-threatening health condition during pregnancy is a heart wrenching experience. A prenatal diagnosis impacts every aspect of a person’s life: spiritual, emotional and family life. The news can leave parents in a state of shock and uncertainty and they may face anguishing medical decisions.
Those around the pregnant mother and her partner — including extended family members and friends — often wonder how they can provide the best support during such a trying time.
In my role as chaplain in the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia, I find that people are so eager to help make a mother or partner going through this experience feel better that they tend to offer advice that isn’t helpful.
Here are some specific suggestions for those looking to support their friend or loved one after they receive a fetal diagnosis.
- Stand with them in the mystery and pain. Prenatal diagnoses have many shades of gray. A lot of people are uncomfortable with the mystery of it all. Be with them as they take this news in and try to grapple with what it might mean. No one is looking to you for answers. They yearn for love, compassion and understanding. You might say, “There’s nothing you can say that I can’t hear.” This lets the mother know she won’t be abandoned and that she’ll be supported no matter what. Both partners need a safe place where each can talk about what they’re going through and the complicated and sometimes conflicting emotions they feel.
- Listen. When someone gets bad news, we want to reassure them that it’s going to be OK when the truth is it may or may not. Listening deeply and being a quiet, compassionate presence can be challenging, but it’s the most important thing you can do for a mother or her partner who receives a difficult prenatal diagnosis. Listen to them talk about how they are really feeling. Share your thoughts when you are asked and remind them that you will always be there for them.
- Say what you know is true, even if it makes you feel vulnerable. Instead of trying to make them feel better with clichés that have little meaning, say what is true. Acknowledge the hardship of the experience and what you are feeling, like:
- “I wish this hadn’t happened to you.”
- “Words feel so small in a moment like this.”
- “I don’t know what to say and I’m sad this has happened to you.”
- “How I wish everything was different right now.”
- “It feels so unfair.”
- Ask open-ended questions. Ask questions that open the door for people to be honest about where they are mentally and emotionally, like:
- “Tell me what you’re thinking right now?”
- “What frightens you the most?”
- “What’s it like to go through this?”
- Be consistent. Offer your unwavering and nonjudgmental presence and support on an ongoing basis.
- Don’t apply your narrative to someone else’s experience. Don’t tell a person who received a prenatal diagnosis that you know why this has happened to them.
- Don’t impose your religious or cultural beliefs on anyone else. You may not know what this person believes or how they are going to make sense of this. They may not believe in religion, they may question their religion, they may feel like they are being punished by a higher power or they may grow closer to their religion. Sometimes people open-up to love and spirituality in new and extraordinary ways.
- Don’t expect them to always tell you what they need. They may not know what they need, or their needs may change. Be proactive and specific in the support you offer, like organizing a meal train with neighbors and friends, having a fundraiser, donating vacation time if you’re work colleagues, providing gas cards, etc.
These situations draw mothers, partners and families into the heart of the deepest mysteries of the human condition. Making meaning of these moments can be the work of a lifetime. Sometimes there are no good or easy answers, only difficult choices. It’s been said that we live life forward but understand it backwards. In time, families may see meaning and find understanding that is not perceptible now.
What is undeniably true is that at the Center for Fetal Diagnosis and Treatment, each mother and her baby receive the best care the world has to give. There’s no mystery to that truth. It is a commitment all of us at the Center are proud to uphold.