In Loving Memory of Baby Hannah

When we found out that our precious first child had a cystic hydroma and Hydrops, and would likely have a chromosomal abnormality that was terminal, we were filled with grief.  Immediately came the questions - What would this mean for our child? What were the risks to my health in carrying her? We were encouraged by most doctors to immediately terminate the pregnancy, and felt scared, confused and defeated when most of our questions about my health and our child's chances of making it to term were answered vaguely. After an amnio, we discovered that our child was a girl, and that she had Trisomy 18.  It was difficult to hear the news, but in a way, we appreciated having a more definitive understanding of Hannah's condition, and a better ability to celebrate the brief life we knew she would have. I remember being so excited to know that she was a girl, and identify more deeply with the life growing inside me. Throughout our turmoil, my husband and I were still filled with an overwhelming sense of peace and acceptance in our journey, and knew that our charge was to simply love our daughter for the time in which she was entrusted to us.
Still, we were filled with questions and doubts about the decision we should make.  The prevailing sentiment from the doctors we talked to was this: If your daughter has a terminal condition and is likely not going to make it to term, let alone survive for long outside the womb, why bother assuming any more risk for yourself? Logically, this seemed to make sense, and to be honest, we struggled with and considered ending the pregnancy--something I never would have considered before, and a decision I never thought I would encounter.  Yet as we reflected, my husband and I knew in our hearts that the best way we could love our daughter was to care for her through nourishing her in my womb, and to allow her life to naturally end whenever God had it planned.  (On the day I received her official diagnosis and before meeting with the doctors, I wrote a letter to "my dear baby girl" telling her how much I loved her and the sadness I was feeling. I think reading that letter, recognizing her more fully as our daughter, is what really led my husband know that I needed to carry her). We were comforted by the fact that it seemed that I bore no more risk than that of a normal pregnancy.  The emotions in this stage were a strange mix of seemingly counter-intuitive responses; on the one hand, we wanted her life to end quickly and peacefully, so that she would not endure any pain and so that we could begin in a clearer way the grieving process that had already begun.  On the other hand, we longed for the miracle of meeting her face to face, of holding for her and seeing her life outside the womb.
Throughout the weeks between finding out our daughter was terminally ill and her passing (which seemed like months), her brief life graced the world with incredible force.  We watched in awe as our friends and family, along with ourselves, more fully appreciated the gift of life in whatever form it takes.  We saw our community invigorated with love for us and the daughter none of us had met, and were amazed by the impact she could have on the world.  We found friends of friends who had endured the grief of a child with Trisomy 18, and were inspired by their wonder at their children's brief lives.  We named her Hannah (meaning grace, which is what she was to us) Marie.
Sadly, we did not have our wish of meeting our baby girl face to face.  Hannah died in-utero on October 12, 2009, at 16 weeks.  We had a simple, beautiful funeral service for her, and scattered her ashes and said goodbye to her on a beach that is dear to my family, where my husband also proposed to me.  I miss her dearly, and wish so much that I could hold her and continue to nourish her life.  Yet despite the pain and loss we endure, it is born out of a love for a child that we view not as a terminal diagnosis, a hardship, or a mistake, but as a great gift to our lives.  We are grateful for the brief time we spent with Hannah as she grew and her heart beat in my body, and so grateful that God guided us to the decision to care for her life for as long as it would last.  

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.