We have two healthy daughters, Anne and Kate, who were 7 and 5. We decided to complete our family with baby number 3. I had suffered 2 miscarriages and then finally conceived Grace. We were all looking forward to this much wanted addition to our family.
I was 40 years old. Prenatal testing was just part of the routine care for someone my age. I never thought much about it. My AFP came back with the need to do further testing. So, we went for a level 2 sonogram when I was about 19 weeks. As I was lying on the table having the procedure done, you could tell there was something not quite right. The technician got real quiet and went to get the attending physician. How could this be happening to us? Our world came crashing down in a matter of minutes. Our baby was no longer our baby, instead, in the medical community she became a "fetus with a fatal defect".
The attending physician called us into her office and explained that it looked very likely that we had a trisomy 18 baby. My husband and I knew from the very beginning that termination was not an option for us. We were sent home that day with no support or resources to continue a pregnancy like this. This made a tragic situation worse.
I had to seek out and find help on my own. I found Hospice by accident due to the death of a close friend. I spoke with Mary Gravina, a children's bereavement specialist from Hospice Care Network. At the end of our conversation, I asked Mary about my own uncertain situation. Mary and hospice supported my family as we blazed a trail neither one of us had been on. They had never had a case like this before. Mary welcomed me and walked with us as we figured out how to go. Hospice was a tremendous support to us before, during and after Grace. We started bereavement work with my daughters 2 months before Graces' birth. My girls are healthy and whole because of all the work Mary did with us.
It took a lot of planning and preparation for Grace's birth. My OB supported our decision and suggested we write a birth plan. This became the blueprint for much of the planning and preparation that was ahead. Hospice, my OB and Hospital staff worked closely together to make our birth plan happen. Mary and hospice were a tremendous support during the many meetings we had to discuss all the possible outcomes and some of the decisions we would face later.
The day Grace was born was a day of celebration and of tremendous stress. Hospice had made many arrangements with the hospital to make it better for us and my family. Mary got the hospital to provide a private family waiting room for my family as well as access to us in the recovery room. The coordination and hard work of hospice with the hospital staff made a good experience out of a very difficult one.
I couldn't believe she was born alive….the day I had been fearing was one of joy. Even though I knew the time was going to be short---I held on tight. I wanted to memorize every feature and I just soaked her in. It didn't matter what was ahead, I had my baby in my arms and she was mine. God was throwing in some curveballs..
Grace's condition was slightly different than what we originally expected. We went from counting minutes and hours to counting days, weeks and months. Our focused had to shift now. I never planned anything beyond her her birth. Again, Mary and I began to explore uncharted waters.
This truly became a "Perinatal Hospice" case…we were in for an experience. We were able to have more time, be a family and make many, many more memories. Once the prognosis changed we began to talk about taking Grace home. This was something I had never dared to dream about. She gently helped us to see that we could bring Grace home.
Grace came home on her 1 month birthday. There was a Hospice Team supporting us. I never felt alone, even though she was getting sicker and sicker. We got used to it and realized that we could take care of her at home with the support hospice provided. We continued to love and cherish our time with her. We made things as normal as possible. Her sisters got to really know her. Many, many people came and held her. We made many precious memories. She continued to get sicker, but we just loved her and trusted in God. She was tiring out…but it was not frightening. We had tremendous grace and support. Grace passed away on her 2 nd month birthday. She was in my arms surrounded by love. Her passing was peaceful and gentle just as I had prayed for.
Almost 4 years later, I still miss my daughter every day however I do not have any regrets or guilt…just the grief of losing a much loved child. I was able to be my daughter's mother here on Earth even though it was for a short time. I gave her every chance at life. My experience was that she was a miracle, and not a diagnosis—she was just a little baby. I am so blessed that I had the support and faith to carry her. I know that in situations like ours the pressure to terminate is so very great. I thank God we didn't listen to the doctors the day she was diagnosed. We would have missed out on the blessing that she was. She is gently guiding me each and every day to reach out and let other moms know that there is hope.
Written by her mother, Chris
Grace's website- www.graceannenugent.netfirms.com
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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.