“Poor prenatal diagnosis”: these words are sudden, jarring and unbearable.
My world came crashing down when I learned that Lily, my second daughter, bore this horrendous fate.
It must be a mistake, I thought. But test after test by the best Maternal Fetal Medicine Specialists in the country made it clear that Lily was extremely sick from something called congenital CMV. The damage to her little body was severe. If she did survive birth, she would likely be severally disabled, with what doctors deemed a “very poor quality of life.”
As I sat in the examination room and the initial shock subsided, I asked the doctors what they would do if they were in my situation. Without hesitation, the doctor said “I would ‘interrupt’ the pregnancy.”
My head began to spin as I tried to grasp the meaning of those words. He was telling me to end my pregnancy – to abort my child. In that moment, I fully understood the fear, desperation, and hopelessness experienced by families who are forced to make a choice between what the experts tell them and what their hearts long for.
My husband and I thanked the doctors and went home.
We decided we would savor and celebrate whatever time we had with Lily. My husband read to her and kissed my belly, her older sister gave her hugs and told her she loved her. We made a conscious decision to make each day special to celebrate her life, no matter how brief.
Quite by accident, we learned of a network of parents and professionals who had experienced or worked closely with issues surrounding poor prenatal diagnosis. Volunteers from Lily’s Gift, as it came to be known, offered practical guidance and compassionate and merciful care, focusing on meeting the needs of expectant parents as they sought to honor the life of their baby no matter how frail or how brief.
This was the help we so desperately wanted and needed. We are so very grateful to Sr. Kathleen Schipani of the Archdiocese of Philadelphia and the ministry for giving us a place to turn.
We didn’t need encouragement on how or why to end Lily’s life. We needed to know how we could best honor and remember her. We needed help to sort through any medical decisions we might have to make. And eventually, how to grieve Lily’s death when she was stillborn at 26 weeks.
There are some that asked why I didn’t abort Lily. I was called selfish for not “letting her go.” I, too, struggled with those unrelenting thoughts. What if she’s suffering? What if she’s scared?
My mother’s words eased my fears. “Your baby only knows security, love and protection in your womb. She feels your love and you are all she has ever known.”
We live in a world of instant gratification where patience is no longer a virtue. If things are not working out, we move on and call it a day. For me and my husband, it came down to honoring Lily with her own natural death, in her and God’s time, not ours.
Suffering is part of the human condition. But it is our response to suffering that gives meaning to our lives. It is the choices we make, in the midst of our pain, that truly matter.
Our story doesn’t end with the death of Lily. Through this entire ordeal, we experienced immeasurable love from family, friends, even strangers. It was through this experience that God gave us an incredible insight. Lily, in her brief life, showed us fully the loving heart of God and the goodness of His people. I am blessed to know that she touched the hearts of many and that she is in Heaven, at peace and perfect, praying for her family here on earth.
As my mother said in our sweet baby’s eulogy:
“For in our time of pain and vulnerability, a time when it would have been so easy to blame and curse God, Lily took us by the hand and led us straight to the feet of our heavenly Father. She revealed to us that love is more powerful than death and that peace and wholeness are waiting for us the moment we decide to let go of the burdens that this life brings and enter into God’s loving embrace. Her purpose has been completed – her gift has been given.”
Lily, we understand, your Mommy and Daddy and all of us know: what is beyond all knowing: “When everything passes away, what remains is Love.”
Be Not Afraid is an organization dedicated to helping parents whose unborn child has a serious prenatal diagnosis.
[See also: 5 Feminist Pioneers Who Were Against Abortion]