For as long as I can remember, I wanted to have babies. I found myself at the age of 33 and it just wasn’t looking like being a mother was going to happen for me. All of my close friends around me had children, and sometimes I felt a bit jealous. My fiance, Kenny, and I had been trying for almost a year by this point, and I was beginning to give up hope. I would ask God why wasn’t it happening for me? Then in March, 2014, God answered me. I was a week late and decided to pick up a pregnancy test on my lunch break. I really didn’t think I was pregnant as every test I had ever taken in my life was always negative. I went home and took the test. I left the test on the bathroom counter and went into the kitchen to make myself a sandwich. When I went to look at the test, my heart skipped a beat and I couldn’t believe my eyes. I started shaking as emotions flooded through me. I was excited and nervous at the same time. I was both happy and scared. I then had to return to work with this news bubbling inside of me to the point where I could barely concentrate. That night I shared the news with Kenny and I think we were both in shock. It was as if it was just too good to be true.
Soon after I shared the news with my friends and loved ones. My first doctor’s appointment was scheduled for early April and the journey had begun. The first time I saw my baby on ultrasound I teared up. She looked like a tiny blur on the screen, yet I felt such a strong emotional force. The connection between mother and child. I was 8 weeks pregnant.
My pregnancy seemed to be textbook. I had morning sickness during the first trimester and I was always tired. By my second trimester my energy had came back and my morning sickness was gone. I was feeling great and my belly bump was starting to show. I would look down with proud eyes. I never felt more beautiful. All of my doctor’s appointments were going well. My initial screening tests all came back with a very low risk of a chromosomal abnormality. I took the standard blood screening where they check for protein, the nuchal translucency test where they measure the fluid behind the baby’s neck and also check for the nasal bone. I was assured that all looked normal and healthy.
I don’t know why, but my heart told me I had a baby girl inside of me. I concentrated on names for girls. One name stuck immediately, Amiyah. The name means beloved. I knew right away that I was carrying Amiyah.
Finally the time came for our 20 week scan. This was the appointment that would tell us if we were having a boy or a girl. Our baby was so stubborn. It took us almost three hours to determine the sex. A girl! A beautiful baby girl. I was ecstatic. I enjoyed the weekend and was so delighted with the news we had received.
Monday morning changed everything. I was at work still high on life when my phone rang. It was the doctor’s office informing me that they might have spotted a hole in my baby’s heart. They told me not to worry as it was not yet certain, but that I needed to drive up to a specialist to have another ultrasound. My heart sank. I called Kenny immediately and we were both in shock. We made the appointment the next day and prayed so hard that it was a mistake. There was no mistake. Baby Amiyah had a complex heart defect known as Tetralogy of Fallot. My mind went blank as the doctor tried to explain the diagnosis. So what happens next? The doctor explained that my baby would need open heart surgery after birth. She told us that this was a common heart defect and that the surgeries have a very high success rate. As I allowed her words to sink in she hit us with another bomb. She told us our baby was “small” for her gestational age. I asked what does that mean. She went on to explain that her size in addition to her heart defect were markers for chromosome diseases, such as Trisomy 18 and Trisomy 13. I just ignored her. I was mad. Why does it have to be a chromosome problem? Why do they have to assume the worst? I remember leaving that appointment with tears burning down my face. On the ride home the freeway seemed to never end and life outside looked dull, even though the sun was shining and the sky was blue.
By the time we got home, I just wanted to read everything I could about Tetralogy of Fallot online. I read for hours and hours and could not sleep. My heart was in so much pain it was unbearable. I read stories of mothers who went though this and I found comfort in the their success stories. I decided then and there that I would pick myself up and make myself strong for Amiyah. She would survive this. I dove into the decorating the nursery. I decided that I wanted an Alice in Wonderland theme. I searched our city high and low and could not find what I wanted. I found myself online for hours ordering wall paper border from Canada and decals and pictures from all over the world. I made her mobile by hand and I hand painted her room. It was looking like wonderland and the project kept my mind busy.
Three weeks later at our follow up appointment to check Amiyah’s growth we were hit with another blow. Our baby girl went from being a week behind in growth to three weeks behind in growth. Our doctor was very concerned and needed to revisit the possibility of a chromosome problem. She did not feel that this was Trisomy 21 (Down Syndrome), but rather Trisomy 18 or Trisomy 13. The ones they say are “incompatible with life”. Again, I felt anger building inside of me as the tears streamed down my face. Why must these doctors assume the worst? They explained that they need to be prepared. So now I was faced with testing options. I had already refused the amnio because of the risk of miscarriage that comes along with it. I was told of a new blood test called Harmony that tests the fetal DNA in my blood. Since this was a non-invasive test with no risk, I opted to take that test the same day. The test was said to be 99.9% accurate. I went ahead and took the blood test and then spent the next two weeks obsessing over it.
I decided I would do everything in my power to help my baby grow. I had been exercising up to that point, but decided to take a break. I started eat over 100 grams of protein a day. I constantly felt full and uncomfortable, but I didn’t care. I just wanted my baby to grow.
While the blood tests results were still pending, I had an appointment with a cardiologist at OHSU to have a fetal echocardiogram. Finally, an appointment where the doctor was optimistic. We left the appointment feeling hopeful. We were advised that if our test returned positive for Trisomy 18 or 13, then heart surgery would no longer be an option due to the baby’s prognosis. My heart still told me that she did not have any kind of Trisomy. I slept well that night.
The very next morning I went in for my two hour timed glucose testing. I had stopped working on the nursery in light of all the bad news we had been receiving, but I felt positive that morning and had plans to go to the art store to work on some projects I had found on Pinterest. After hours of getting poked by needles, I headed home feeling pretty good about the day. I stopped and Jamba Juice to get a healthy breakfast and then came home. About 30 minutes after I had been home my phone rang. I listened to the voice mail and it was a genetics counselor asking me to return her call. The tone of her voice made my heart drop. I ran into the bathroom and dropped to me knees and prayed to God to let my baby be OK. I begged and begged on my hands and knees. Finally I composed myself and I called back and was met with another somber tone. My heart sank. The results were positive for Trisomy 18. I remember crying so hard it hurt. It was necessary for me at this point to get the amnio. I had to know for sure.
I scheduled the amnio for the very next day. I was a bit nervous about a 6 inch needle being stuck in my belly, but it wasn’t too bad. We watched Amiyah on the ultrasound while they performed the procedure and I witnessed something that will stay with me forever. After the needle goes into the sack, they remove the sharp part and only plastic remains so not to harm the baby. My feisty little girl immediately started kicking at this object that had entered her home. As we watched this on the ultrasound screen, everyone in the room had a smile on their face. She had a big personality.
Over the next two weeks we waited. These two weeks were the hardest and darkest part of my pregnancy. Something about not knowing just made it all unbearable. I became a bi polar nut. I obsessively read every article I could find on these so called “fetal DNA” blood tests. As it turns out, the DNA is not from the fetus, but rather from the placenta. This means that if the placenta somehow carried an extra chromosome, there was still a small chance that the fetus could be perfectly healthy. This is called Confined Placental Mosaicism.
I dedicated my time to researching false positives. I read every story of false positives I could find. I would read them over and over just so that I could get to sleep some nights. I became bi polar mess. One minute I would convince myself that our baby was healthy and this was just a big mistake. I challenged God that I was not strong enough to deal with this, so therefore she had to be OK. But God never gives us more than we can handle. Some days I would become convinced that the baby I was carrying had Trisomy 18. I would call Kenny at work crying hysterically. I was driving myself insane.
Our doctors had advised that terminating the pregnancy was recommended from a medical standpoint, simply because the prognosis is that the baby won’t live so why have the mother put her health at further risk? The thought disgusted me. How could I be any part of ending my child’s life? This child I had longed for for so long. Though I must admit that during my darkest hours I began to comfort myself with the option of termination. Just knowing that the option existed somehow calmed me down. How would I continue a doomed pregnancy for several more months? How would I handle all the joyful questions from friends and co workers and even strangers? How could I wake up every day and continue to watch my belly grow? A constant reminder that I would lose her. I was exhausted.
One day I was at work and I noticed light blood after using the restroom. I suddenly couldn’t remember the last time I felt Amiyah kick. I panicked. I called Kenny at work and he raced home and took me to the doctor. The ultrasound showed my little girl kicking up a storm. Her heartbeat was strong. After my exam, my doctor attributed the bleeding to irritation from the amnio and I was sent home.
The very next day I watched my phone like a hawk, praying that the dreaded test result call would not come. After work I came home to an empty apartment. Kenny was working late. Around 8PM, the call came. The results were positive. Every chromosome they tested has an extra 18th chromosome. Amiyah had full Trisomy 18. I had a ringing in my ear that wouldn’t stop as she continued to speak. I could barely speak. I began to cry uncontrollably. The genetics counselor on the other line was speaking, but I couldn’t make out what she was saying. It’s like there was an emotional earthquake that only I could feel. I was beyond devastated. I asked a few questions, like what happens next? She immediately brought up termination as an option. It was at that moment that I knew 100% without doubt that termination would not be an option for me. I sobbed that I could not do that. I asked what full Trisomy 18 meant exactly. She explained that it was the most common type and it rules out both parents as carriers. In cases of partial Trisomy 18 or Translocated Trisomy 18, a parent may be a carrier, increasing the risk of subsequential Trisomy pregnancies in the future. Mostly I just cried and cried. My heart was just broken. How do I grieve my child who is still alive inside of me? A morbid thought. I hung up the phone and called Kenny at work. I could hear the shock in his voice. He came home early that night and there was a lot of crying.
After that night I felt a strange relief. Not because we just received the worst news in the world, but because we now knew what we were dealing with and could finally prepare ourselves accordingly. We could feel sad and we could cry and grieve without questioning if everything was going to be OK. I had read other similar stories of women who actually began to enjoy their pregnancies after finding out this tragic news. I though that was ludacris. But let me tell you, things change. Over time, I did begin to enjoy my pregnancy. I realized that this is my time with her. We spoke to her each night and relished every movement. I started walking again for exercise and continued to eat healthy and take my vitamins. It was my job to nourish my baby and keep her healthy. God does not promise any of us a certain length of time on this earth. But I had a job to take care of my baby while she was here. I enjoyed taking pregnancy photos and savoring the memories. My doctor did not think that Amiyah would make it full term. She felt that it would be more likely that her heart would randomly stop. So I went to my doctor’s appointments every two weeks for ultrasounds. Her heartbeat was always strong and beautiful. My Amiyah had been defying odds from the beginning, and I had no doubt that she would fight until the end. And she absolutely did.
My induction date was scheduled for November 6th, 2014. We arrived the night before to begin the induction. I had Kenny, his mom and my best friend all there with me. I couldn’t have asked for a better support team. They began the medication at midnight. I was told it could take 24 hours to work. By noon the next day my cramps had become unbearable. My water had broke but I didn’t realize that was what had happened. I never got my epidural because I though we would have more time. Then she came. Born at 12:17PM on November 6th, 2014. She was 3lbs 5oz and 15.5 inches long. She was stillborn and went straight to heaven just as pure as can be. I was scared to see her. I heard my best friend saying how beautiful she was as the doctor pushed my placenta out. And was she ever…. I had expected deformities and possibly a cleft lip or cleft palate. Amiyah didn’t even have the clubbed fingers or rocker feet associated with Trisomy 18. I was in awe of her. She looked like me with daddy’s nose. She had my hands and daddy’s feet. She had a sun kissed complexion and defined lips. She was like sunlight. And we all admired her and held her close for two days. Those two days were so necessary. She did not seem like a dead baby. She just looked like she was sleeping peacefully. She was an absolute angel. She smelled so sweet and her fine hair was like silk. Her skin was so soft and delicate none of us could stop kissing her. We fought over holding her. Saying our final goodbye was the hardest thing I have ever had to do. We lay our angel on a blanket and we all kneeled around her and prayed. We kissed her and told her how much we love and adore her. I never knew the power of a mother’s love until I met Amiyah. It is strong enough to move heaven and earth. And I thank God for the blessing of allowing me to be her mother. I am comforted knowing that we will meet again one day. I would do this again a thousand times just to see her beautiful face.
I do not judge any mother’s choice to end their pregnancies under these heartbreaking circumstances. I would just like to encourage mother’s to continue if they feel strong enough. There are just so many rewards. After we lost Amiyah, a close friend said to me ”Amiyah needed your body to live. There is something romantic about that.” Those words really resinated with me. I though it was a beautiful perspective.
When I was in my darkest hours, I found comfort in reading other women’s journeys through this dark time. At times I thought I would never make it through. But I assure you, you will. And you will come out so much stronger on the other side. If you are going through a Trisomy pregnancy, I am here for you if you have questions or just need to vent. We just lost Amiyah this month, but I feel that it is my responsibility to help other women if I can. Please feel free to contact me at hanlon.susan@yahoo.com.
