Our story of choosing life after a fatal prenatal diagnosis
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 were in Heaven, due to miscarriage. We were filled with both excitement and fear at the same time because our most recent loss had only been 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. 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.
We scheduled an appointment the next day with another OB who had a 4D ultrasound, because we couldn't get into see the high risk doctor until the next week. The 4D ultrasound revealed probable hypoplastic left heart syndrome and a few markers for a chromosomal disorder. That doctor believed that our little girl just had a heart condition and although it was very serious, there was a good chance that it could be corrected with a series of surgeries. We left that appointment with hope.
The following week we met with the Maternal Fetal Specialist. The level II ultrasound indicated "numerous markers" of a chromosomal abnormality a severe heart condition (hypoplastic left heart), enlarged ecogentic kidneys, rocker bottom feet, a sloped forehead, recessed chin, and the list went on. The doctor that day didn't give us his opinion on a diagnosis, but explained it to us that if we were to get 5 scratch off lottery tickets and win $100 on each one we would start to wonder what is going on, and this may indeed be more than an isolated heart defect. He gave us the name of a pediatric cardiac surgeon a few hours north of us, but said that "if it were trisomy 13 or 18, it wouldn't be worth risking our lives on the freeway." He explained that both of these conditions were "incompatible with life" and that we needed to get an amnio to know for sure. When we told him that we wouldn't terminate the pregnancy no matter what, his jaw dropped to the ground and the t one of the conversation changed completely. We knew at that point that we would have to fight for our daughter's life even while in the womb.
We left that appointment with the thought that we were not going to get the amnio. However, once the APF results came back normal, 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. The amnio was done on Friday the 13'th in May of 2005. Monday afternoon at 5PM I got the phone call that turned our world upside down. Our baby girl had Trisomy 13 which the genetic counselor described on the phone as being "lethal." I cried and cried and God consoled me through our four year old daughter who put her arms around me and asked, "why are you crying Mommy." I had to explain to her that the little baby growing in Mommy's tummy might go to Heaven and that I was sad because I wanted our baby girl to come home and play with us. I believe her response was inspired from above. She said in reply, "it is OK Mommy, she will have much more fun in Heaven and Mother Mary will take such good care of her." My husband left the office immediately and we held each other and cried, and then we researched Trisomy 13 in search of hope.
We found that 5-10% of these babies survive their first year and some live many years and are such blessing to their families and those lives they touch. We tried to hang on to the hope that our baby would be one of these special babies. We decided to name our little girl and break our family rule of not naming our child before birth. We wanted to be able to refer to her by name and bond as much with her as we could while she was alive. We named her Gemma Therese after St. Gemma Galganti, a powerful 19'th century saint who was cured at a young age of a terminal illness and was frequently visited by her guardian angel.
At 25 weeks we thought we were out of the woods as far as pressure to terminate is concerned, as the law in our state is 24 weeks. Our baby's life was under attack and it was disguised as compassion. I went to that appointment myself that day figuring that it couldn't get any worse than it already was. I was wrong. They found her heart defect to be very severe, fluid and cysts in her brain, enlarged cystic kidneys, low amniotic fluid and an omphalocele (her intestines formed outside her body). I was told that our baby had an 80-90% probability of being born still between weeks 20-30. Then, after watching our baby swim happily inside me, suck her thumb and move her little feet, the doctor put her hand on my knee and said in a loving voice as I wept, "you know you can terminate this pregnancy for good reason by inducing labor, and this is indeed a very good reason." I was sobbing. Our baby was going to die and she asked me if I wanted to end her life now! I felt as t hough no one in the medical profession valued our baby because of her genetic makeup and I could do nothing but sit there and cry. I wanted to love and honor the life of our little girl and I wanted everyone else to do so to.
We prayed for a miracle and planned for the worse. I bought the tiniest preemie outfits that were sold as "resting gowns". I sewed lace on the gown and hat and we packed our bags for the hospital "just in case." We worked on numerous birth plans, and always had one on hand for a still birth. My husband and I worked on mass e-mails together to keep family and friends informed of our little Gemma. This helped a lot, knowing that although some people (especially those in the medical profession) may be against our decision to carry to term, many people were praying for us and our baby girl. They prayed and we prayed. We prayed for a miracle, we prayed for a complete healing if it was God's will, we prayed for acceptance if He wanted her Home, and we prayed for God to put people in our lives to guide us through this journey.
This was a battle and we needed help. This was too much for us. We didn't know where to turn. We wanted so badly to save her life and have a baby to hold and care for. We knew that if she did survive and wasn't miraculously cured that she would be severely disabled and require quite a few surgeries. We had heard of some parents who chose to aggressively treat their trisomy babies and we wanted to see if this was an option for our Gemma.
After a while we began receiving support from the local high-risk doctors. I believe it was the phone call to the head doctor from my husband that turned the corner. We then met with the perinatologist I had been seeing all along. We were adamant that we wanted to go forward with this pregnancy. We wanted for Gemma to continue to be monitored and we wanted to find out medically if it was possible to treat her. We also presented them with a booklet we had made which was a compilation of many stories of living trisomy babies and resources for them encouraging them to support a family's decision to carry to term. We feel strongly that all women and families given a pre-natal diagnosis such as this should be given not only the option of carrying to term but also support and resources including names of people who have walked this journey before.
We were fortunate that my OB was supportive in whatever our decision was and he was willing to make contacts and help us in any way he could. He respected our decision and we were grateful, but not ready for the responses were about to receive from other doctors. We were told that heart surgery for a baby with trisomy 13 would be "a huge waste of resources" and the OB's who practice at bigger hospitals that I spoke with were reluctant to do a C-section. We ended up talking with neonatologists from three hospitals in the state. After these conversations and subsequent distressing appointments with the perinatologists it became pretty clear to us that Gemma's numerous medical conditions were beyond repair and after months of going back and forth between aggressive treatment and compassionate care we decided to deliver locally and hold and love our little girl for as long as God allowed.
Our primary hope and prayer for Gemma was for her to be born alive and baptized. Because of Gemma's numerous medical problems, we felt strongly that a C-section would be the safest bet for a life birth. We latter decided that it wouldn't be worth risking an emergency C-section and me having to be put asleep and possibly miss precious time with our little girl. We didn't want to fight the doctors on this one and in the end didn't need to. My OB was supportive the entire time and in the end was backed up by the perinatologists who felt that because of the size of her kidneys there was risk of rupture which could pose a risk for both Gemma and myself. The perinatologists suggested that we do a C-Section between 35 and 37 weeks in order to optimize the chances for a live birth.
We continued to plan for Gemma's life and death. We met with the hospital staff and funeral director. We picked out a cemetery plot but held off on looking at readings for the funeral and grave stones. I also got stuffed animals for our three other children and had a peace of fabric embroidered with Gemma's name on it which I sewed onto the animals. I did the same thing for the few things that we bought for Gemma. This helped make me feel like I was doing something for our little girl. We still hoped and prayed for a miracle. We met with our parish priest on several occasions and he stood by our side though out this journey. God also put someone in our lives, a nurse midwife, who lost a baby girl, Emma Grace, to Trisomy 18. We were so blessed to have someone with such knowledge and experience to hold our hands and help us celebrate the life our baby girl.
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 weighed 5 lbs, 6 oz's and was 16 ½ inches long. The hospital staff was amazing and made it possible for all of our family and friends to meet our little Gem. 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. Our Gemma was born alive and baptized and that in itself was a miracle. May God bless you in your journey.