In January of 2005, our family moved across the state. At that time our children were 1, 2 and 4 years old, and to our surprise, weeks after the move, we quickly found out that we were expecting our sixth child, two of which are in Heaven, due to miscarriage. We were filled with both excitement and fear at the same time because our most recent loss had only four months prior. We made it through the first trimester with very few concerns. Unfortunately, at 17 weeks gestation, our world quickly changed at what was supposed to be a routine OB visit. I had gone by myself, because we were not expecting to have an ultrasound. While looking for the gender of our baby, the sonographer announced that there were some abnormalities, some of which were indicators of a chromosomal disorder. Our doctor then referred us to a high risk specialist for a Level II ultrasound. The one good thing that came from that doctor’s appointment was the sealed envelope sitting in the bottom of my purse, reading “95% girl”. We knew that I was carrying a little princess and wanted to do everything we could to honor and protect her life. The following week we met with the Maternal Fetal Specialist. The ultrasound indicated “numerous markers” of a chromosomal abnormality ñ a severe heart condition: hypoplastic left heart, enlarged kidneys, rocker bottom feet, and the list went on. Once the APF results came back normal for Down’s Syndrome and Trisomy 18, we decided to go ahead with the amnio, in order to help us rule out Trisomy 18 and 13 so that we could hopefully just focus on her heart and other medical conditions. The amnio was done on Friday the 13’th in May of 2005. The Amnio confirmed Full Trisomy 13 which is almost always “incompatible with life” according to the doctors. We knew however, that 5-10% of these precious babies survive their first year and some live many years and are such blessings to their families and those whose lives they touch. We continued to hang on to the hope that Gemma would be one of these special babies. Although, our primary hope all along was for Gemma to be born alive and baptized, as we were given an 80-90% probability of Gemma being stillborn between weeks 20-30. We prayed for a miracle. As time went on the high risk doctors continued to find more problems with her major organs. They found her heart defect to be very severe, fluid and cysts in her brain, enlarged cystic kidneys, and an omphalocele (her intestines formed outside her body). We called numerous doctors from various hospitals and the answers were all the same, they couldn’t correct her various problems with her heart condition and they couldn’t perform heart surgery unless she was stable, which wasn’t possible with her other conditions. Due to the response from the various neonatologists and Obstetricians in distant towns, we decided to love our little girl for as long as God would allow and not to attempt to aggressively treat her. Because of the size of Gemma’s kidneys and omphalocele, there was risk of rupture and we, along with the doctors, felt that having a C-section was Gemma’s safest bet for a life birth. We choose Sept, 8, to be Gemma’s birthday, which is also the day in which the Catholic Church celebrates the Blessed Mother’s Birthday. We feel extremely blessed to have had such a special day for our daughter’s birth. She was born at 35 weeks and 1 day, because we, along with the doctors felt that her days inside me were numbered and that this was the best chance of Gemma being born alive. Our precious Gem was born at 12:38 P.M. and lived for 52 amazing minutes. She weighted 5 lbs, 6 oz’s and was 16 O inches long. She was held by family and friends and knew only love. We believe that Mother Mary now holds our little Gemma in her loving arms and we now have a little Saint in Heaven to pray for us. Although our time with her was short, our lives will never be the same. We are only beginning to comprehend how such a little being can have such a profound impact on our lives and the lives of others. Our little Gemma has taught us how to love deeper, experience gratitude and treasure all of the gifts we have been given, especially the precious minutes we had together with our little Gem in our arms and the 8 1/2 months we had with her living inside me. God is good. He knows our hearts desires and He does answer prayers. May God bless you in your journey. Please feel free to contact us, we have copies of various birth plans we had worked on along with pictures of her omphalocele that we would be happy to share if you think they could help. Terry and Courtney gemmatherese@yahoo.com Back to trisomy 13 Stories You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org.
