I found out I was pregnant in September of 2005 and after my 1st ultrasound I found out that they thought they saw two eggs. I was in shock. My husband and I went back a week later and found out sure enough there were two. We cried, laughed and said what we got ourselves into. Then we started to settle into a routine of being pregnant with twins. I started seeing a specialist due to my age (38 turning 39 soon) and they considered my pregnancy a high risk. All was going well when at 21 weeks they saw something in the one baby – clenched hands and cysts in the brain. The technician then went out of the room and the doctor came in and explained to me what they saw and that it could be something called Trisomy 18 and did I want to do an amniocentesis and then I would no for sure. They said the signs they saw led to T18 and it was incompatible with life. I decided I had to know and did the amniocentesis that day. I then waited for the call to come and when it did I was devastated. I had started researching T18 the day they did the amniocentesis and I saw some really tough things but was lucky to find the Trisomy 18 website and the Prenatal Partners for Life website. The doctors recommended that I see a specialist inNew York Cityand they made an appointment for me the following Monday. When I called to confirm they told me the doctor I was seeing was a specialist in late term abortions. I was shocked and had no idea what I was in for. We decided to go and saw him and did another amniocentesis and he only saw the same things and then we met with a genetic counselor who explained that our baby had full T18 and all of her (yes girl) cells were affected. Based on statistics we were told she would not make it to delivery and we should terminate baby B as soon as possible to avoid complications with baby A who was not affected. We just sat there in shock! What do we do – we said we were not prepared to make that decision right then and said we were going home to do some thinking. When we got home we told our family and some of them said we should do everything to keep her alive and others were worried we would lose them both. My husband and I sat and talked and cried and decided that there was no way we could take our baby’s life and we would leave it in god’s hands. We then got several calls from NYC asking us if we changed our minds and about how much danger baby A could be in and we could lose both babies if I went into premature labor. We asked them to not call us again. The next week we went back to our specialist who also asked us if we had changed our minds and we said no and she told us time was running out as we only had till 24 weeks to terminate. I went home and thought this is my baby and no one is going to tell me what to do. We went back to the specialist the following week and again were told that baby B had doubled her amniotic fluid and this was serious and if it kept up she could cause premature labor and baby A might not survive and we could lose them both. Again I said no and when we went again the next week the fluid had remained the same and stayed that way for the rest of the pregnancy.
I decided to have a c-section, as I felt it might give me more time with Emily Grace ( the name we picked for her) as she would have had to go through two labors and I wanted the best possible chance to meet her alive. We scheduled it for 37.5 weeks and Genna Elizabeth and Emily Grace were born onMay 24, 2006. I was scared and did not hear her cry and then all of a sudden she was on my chest and was the most beautiful little baby (3lbs 8 oz) along with her twin sister. I had them both alive and on my chest against all the doctors warnings and advice. I stayed in the hospital for 4 days and we almost lost Emily 2 times due to apnea spells. But she was a fighter and had other plans – she wanted to come home with her family! She came home with us and stayed another 15 days and we were so lucky to have had her in our lives. She was baptized in our church and was seen and loved by so many people. In her short time here on earth she changed so many lives and taught people the real meaning of unconditional love, including me!
As I sit here today writing my story, I have no regrets and am so happy I chose to give her life. I miss her terribly and wish with all my heart that she could be here today, especially today as she left us 9 months ago.
I really feel Emily was given to me to help others along the way and if my story can help any of you, I know that Emily is doing her job. We are also lucky that our church is helping to keep her memory alive by building the “Emily Grace Place”, a picnic pavilion with 19 tables and bushes to celebrate her life on earth. Emmy we miss you and love you with all our hearts and will never forget your beautiful face!
Bonnie, Dan, Carlee & Genna
