On June 17 we were thrilled to have our first sonogram to see our baby for the first time. It went as planned, so we thought, we saw him moving, kicking and the little heart beating in mine. It was the moment that I realized how incredibly excited we were to give Elena a brother or sister and to grow our family. We left with pictures of our baby and love in our hearts. Naive, we did not even think about the fact that this 13 week sonogram was to detect any fetal abnormalities. We had a perfect pregnancy with Elena, how could anything go wrong?
The following Monday, I received a voicemail from Dr. Hajj to call him back immediately. No words can describe how I felt at that moment, My heart told me that it was something serious. Dr. Hajj never called me once during my pregnancy with Elena and I guess it was “maternal intuition”, I know that my life was changed forever. Efrain came home and we called Dr. Hajj back together. He explained that the sonogram revealed a thick nuchal fluid and lack of a nasal bone. Still I had no idea what this meant and we were told to meet with a genetic counselor that afternoon.
Amy, our genetic counselor, reviewed my sonogram chart and explained that we would receive an advanced sonogram to determine exactly what we were looking at. However, based on the initial sonogram our baby had a 1/5 chance of Down’s Syndrome. I broke down, and started asking questions about how this happened, financial assistance, support groups and how to raise a child with Down’s. I told Amy that we would not want further testing if it was Down’s, we would simply prepare ourselves for a different life with our child.
The following day, I entered the second sonogram with optimism. Maybe the baby had not developed a nasal bone yet, maybe the sonogram was too blurry to read correctly. Efrain remained hopeful but held my hand and told me not to be surprised if this sonogram only confirmed the results. The sonogram started with the tech chatting with us about our due date as we looking once again at his beating heart and little kicks. It did not take long for her to soon become silent and focus on measuring the babies nuchal fluid again and again. Tears streamed down my face and I did not even ask questions. She left to find the doctor and we just prayed. The doctor entered the room and her face told us everything. She told us that the nuchal fluid was very high, there was definitely no nasal bone and our baby was showing signs of clenched hands and club foot, which could be a Trisomy 13 or Trisomy 18 diagnosis. What? Through my tears, I was escorted to meet with the genetic counselor. She explained that based on these findings, my baby did have a 1/10 chance of Trisomy 18.
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy. Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are life-threatening in the early months of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls. At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories. Some children will be able to be discharged from the hospital with home nursing support for their families, less than 10 percent survive to their first birthdays.
Immediately, my mindset changed. The doctor and counselor suggested I consider a CVS, which is a diagnostic test that confirms any chromosomal abnormalities. While I never thought I would consider such a test, I believe it is because I never thought I would need to know the fate of my unborn child. Until you are faced with the reality of such a diagnosis, you do not know what measures you will take to know how to best care for your baby. I was able to return 3 hours later for the CVS test (which is awefully painful) and we would know the results within 24 hours.
It is amazing how your life changes in one week. The week before we just wanted to see our unborn child and know that his life was flourishing inside me. Now we just prayed to be able to ever know him outside my womb. I prayed that they would call with a Down’s Syndrome diagnosis, is that crazy? At least that meant he would have a life, that I would have a life with my child. The call came at 2:30 p.m on June 24. It started with Amy asking if I was with someone and if I was sitting down. My mother and I sat together as she confirmed a full Trisomy 18 diagnosis. I honestly don’t know what else she said, only that I had a very high risk to loss the baby and if I did make it to full term, I was faced with a very high percentage of stillbirth. My baby was sick and I could do nothing. My body is his life support but even that could not keep him alive. I was faced with my child’s death before his birth.
Efrain and I wanted to know the sex of our baby so that we could name him, talk to him and show him our love. A boy, we named him Efrain Alejandro “Alex” , the name we always wanted for our first born son. What should have been a time for us to start decorating our nursery, buying cute clothes and preparing for his birth, we were instead planning his death. What could we do with the time we had, how could we show him we love him and remember him for the weeks or months ahead?
I am not angry, I do not blame God and I do not question why this happened to us. It did and we need to “decide to get better and not bitter”, I read this in a grief book and I have adopted it as my mantra. I already have a new love for my husband. Efrain has been amazing and I could not have asked for a more understanding and loving husband. I look at Elena and I know that I am blessed. She is the most beautiful and wonderful daughter that a mother could ask for. She is a miracle that came into my life and I hope that one day she knows how much she means to me, especially now. My family has been so caring, and my friends have shown me what unconditionally love means. People never cease to amaze me, neighbors helping take care of Elena, cards have come pouring in. I can’t be bitter when I see such love in this world. I only hope that Alex will know how many people loved him before he was born, I only hope that God will protect him and he will eternally live with my nephews, Jason and Kikillo, which I can only imagine will be filled with days of laughter, and that makes me smile.
Alex did a lot in 16 weeks. He traveled to Colombia, attended his Aunt Kim’s wedding, went on many walks with his sister Elena, celebrated his mommy’s 30th Birthday, visited his Nanny and Granddaddy at the beach and celebrated the 4th of July. Monday, July 6th he was born to God. He will never suffer on this earth, he will never know pain..he will only have memories of the love we had for him in his short 16 weeks with us. It was a “Sweet 16”, that is what I am calling it.
Many people have asked me if I wish that I did not have that sonogram, if I did not know that our baby had Trisomy 18, that way i could have enjoyed my pregnancy. I actually feel the opposite. I still love being pregnant and while I was scared after receiving the diagnosis, I actually think it made me appreciate pregnancy even more. Every moment I felt a flutter or just looked at my growing belly, I know that I was a mother. I think I packed all the joy of 9 months of pregnancy into 2 weeks. I touched my belly every minute, Efrain and Elena kissed my belly all the time and we read to Alex each night. Knowing about my son's fate also allowed me to start making memories when I otherwise would have just been preparing for them. I was fortunate to get in touch with an organization called "Now I Lay Me Down to Sleep". They have been featured on the Today Show and it is a group of volunteer photographers that take professional photos of stillborn babies in the hospital. They have also taken pregnancy photos and thus I contacted them to take pictures of Alex inside me. Those are the memories that I will have forever, and I could not be more thankful for Julia Pearson, the photographer that patiently worked through my tears and crazy Elena to take what I am sure will be photos that we will cherish for a lifetime.
Efrain and I are just started the healing process. I still cry a lot and while we know that this was a “fluke” as they call it and we can have more healthy children, right now we just want to remember Alex. We had him cremated and plan to celebrate his “Sweet 16” weeks that we were blessed to have the dream of him alive.