Ever since I was a young girl I knew I wanted kids. I always loved kids and they seemed to like me too. I enjoyed babysitting and mentoring young children. I always used to tell my best friend that the one thing I KNEW I wanted to be was a mom. The most important thing to me was to have a happy family with sweet babies running around. I met my husband in college and he too knew he wanted a family, and wanted to start that family while we were still young. I worked as a medical assistant at an OB/GYN, and that made my “baby fever” crazy! Well, within our first year of marriage I needed to have back surgery, a lumbar fusion. It is a major surgery with a long recovery time. My surgery was in February 2010. I was off work for 4 months, and not cleared to lift more than 15lbs until the end of November. At that time I was told I could also go ahead and try to conceive.
A month later we decided we were ready! We waited for a few months because I was going to be the maid of honor in my best friend’s wedding that October and I didn’t want to be due with my first baby at that same time! After trying for a few months and noticing my cycles being off, I spoke with my doctor. We drew some blood work and discovered I had hypothyroidism. I started medication right away and thought it would probably take a while for my body to adjust and for me to get pregnant. I tried not to be impatient or discouraged, but I wanted a baby so bad! Well, to our shock and delight, we found out I was pregnant one month after starting my thyroid medication!! I couldn’t believe how lucky we were that it happened that fast!!! We told our families on Father’s Day by surprising our dad’s with “Grandpa” father’s day cards. Everyone was thrilled!
I was very nauseous and sick in my first trimester, and it was hard to keep it a secret. But, we did keep it secret from all but a few people until we were 12 weeks. Then, we let the world know and couldn’t have been more excited! After sharing the news with all of our friends over the weekend, I went in to work and told my coworkers. It was the end of July 2011. I told them right before I left to go to my first trimester screen at the Maternal Fetal Medicine office. They do an ultrasound and blood draw as a first screen for genetic disorders. My husband had been with me for two previous ultrasounds and we had decided he didn’t need to miss more work for this one. The first part is the ultrasound. I saw my sweet little baby, this time with arms and legs and a profile. Not just a little blob with a heart beat like the previous ultrasounds had been. I saw the baby moving and everything! It was magical!!
The ultrasound tech was so nice and we chatted through the whole thing. After she got the main measurements, she moved on to measure the nuchal fold (the clear space in the tissue on the back of the baby’s neck). I noticed she got quiet, but told myself I was being paranoid. She stopped the ultrasound and told me she was getting a large measurement. I asked what that meant and she said the baby may just have a cystic hygroma, but she needed to go get a doctor. She left me in the room alone while she went to get the doctor. My heart was racing, I was alone and panicking. What was a cystic hygroma?? I had no idea what anything meant, and I wished my husband was with me. The doctor then came in and told me they saw a cystic hygroma, and that most likely our baby had a chromosomal disorder such as Down’s syndrome, trisomy 13, or trisomy 18. He offered me an appointment two days later with the genetic counselor, who at that time could do a procedure called a chorionic villi sampling, or CVS. That is where they go in and take a sample of the placenta to test the chromosomes. I was terrified and devastated. I called my husband, walked back to my work office, and left as soon as my husband picked me up.
The next two days were horrible waiting to meet with the genetic counselor. When Thursday arrived, we went in and discussed our family histories in depth. The doctor told us there was a 75% chance our baby had a chromosomal disorder. My world was crumbling. We opted to go ahead with the CVS. She did the rapid test, so we should know some information within a few days. The next afternoon we received a call. The baby did NOT have down’s syndrome, trisomy 13, trisomy 28, or Turner’s syndrome and our baby was a boy! A BOY!!!!! We were ecstatic! Now, our doctor told us she was honestly surprised. She warned us that the cystic hygroma could be present due to a heart defect (which we couldn’t do an echo to find out until 22 weeks), or if the cystic hygroma continued to grow, it could cause heart failure. So, while the biggest concerns had been ruled out, we were still possibly looking at some challenges.
She told us to return in 3 weeks for another ultrasound. Those 3 weeks were full of every emotion. I was so excited to be having a son, I was terrified for his health, yet I wanted to be hopeful and start planning for him. I meanwhile was back to work. Finally, the day of our ultrasound arrived. I was so scared. I was almost 16 weeks pregnant by this time. The technician started our scan. Our little boy was SO much bigger! We could see all of his bones, his kidneys, his bladder, and some chambers of his heart! It was amazing! She said his legs were measuring a little behind, but nothing that seemed concerning. The cystic hygroma had not gotten any bigger, and that was also good news. Then she too grew a little quiet. She told us she wasn’t getting a good picture of his jaw line. She said she was going to call the doctor, who was at the other location, and talk to her real quick. She came back in the room and said the doctor wanted to take a look herself and would be there in an hour.
We left ate some lunch and felt pretty good about what we had seen. We went back and the doctor started our ultrasound. She was very quiet through the whole thing and did a lot of looking around. After what felt like forever, she took the ultrasound off my belly and somberly said “I think we know why the hygroma is there.” I sat up and listened to her explain to us the worst news we’ve ever received.
She told us our son had something very rare called Fetal Akinesia Deformation Sequence (FADS) or also known as Pena-Shokeir. Our son had growth restrictions (hence the shortened legs), couldn’t bend his limbs, both his middle and ring fingers were joined, a club foot, and no jaw developing. While this was explained, I kept thinking there must be surgeries that could be done to correct these things. And then I was told the disorder also makes it so his lungs would never mature. It is a fatal disorder. If he survived the pregnancy, he would most likely be born stillborn. Or, he would die shortly after birth due to the immaturity of his lungs. I have never been more devastated in my life. We lost our son at 16 weeks.
It was the toughest thing I’ve ever experience in my life. I was unable to afford much time off of work, and returned a week and a half later. Back to the OB/GYN. I felt tortured every day. Seeing the pregnant women and hearing the usual complaints of discomfort and feeling “huge” was like a knife to my heart. What I wouldn’t have given to be “huge” and uncomfortable with my son!!! It was also hard for me to watch the women come in having miscarriages. My heart felt their grief and my own all at the same time. I also had two very close friends pregnant with boys, both due within a month and a half of Adrian. It was incredibly difficult for me to watch them be pregnant with their sons. Boys who were supposed to be our son’s playmates. When I reflect on this time, I don’t know how I survived. But I did.
Three months after losing our son Adrian, we found out we were expecting again. I was thrilled! Terrified, but thrilled. I felt hopeful in a way I hadn’t since before discovering there was something potentially wrong with Adrian. Every morning I woke up waiting for the symptoms to start, to ease my mind that things were going well. It didn’t happen, but I was only 4 weeks and told myself to try to relax. We told our families on Thanksgiving, after knowing for one week that we were pregnant again. The next day, I started bleeding and miscarried. My world was collapsing.
Back to work I went, again surrounded by the thing that tortured my soul the most. I worried I would never have a healthy baby. That my dreams of becoming a mother were being shattered. That is when I decided to try to take my pain and spin it into something positive. I wanted to help our patients at my work who experienced child loss like I had. I started researching and developing a list of resources and support groups that were added to our website. We bought books to be handed out to the patients who wanted them. It felt so good to feel like I was helping others.
Then, February 6th was approaching, Adrian’s due date. My husband and I decided we needed to get out of town. I needed to be away from work and away from the area where I grieved so hard. We decided to go on vacation to Cancun, Mexico. It was the best thing for both our hearts. It felt great to away together and away from our pain a little bit. I felt distracted in a good way like I hadn’t since losing Adrian. After we returned, I found out my best friend was pregnant. I wanted to be happy for her, but I was also very jealous. I cried, and then felt so guilty for not just feeling happy for her.
One week later, before I had missed my period, I started feeling nauseous and took a pregnancy test. I was pregnant again!!!! I was so nervous. I didn’t have the ecstatic reaction I had with my first two pregnancies. I was fearful, happy, cautious, and a million other things. I was feeling very sick though, and that kept me reassured that things were moving along appropriately.
We went for our first ultrasound and discovered not only was there a heartbeat, there were two!! We were having twins!!!! And with the measurements, it looks like we conceived our babies on Adrian’s due date. We were in shock! Blissful shock!! The news of expecting twins is some that takes time to absorb. There are a lot of risks and we knew we had a long way to go before having our babies in our arms healthy and happy. But, after 14 weeks of bed rest and preterm labor concerns, I gave birth to our identical daughters at 35 weeks on September 26, 2012. They were both healthy and 6lbs each! They didn’t need to be in the NICU and came right home with us. We are so fortunate they were so healthy and we are so lucky to be their parents.
We will never forget Adrian, or our second baby. The pain doesn’t go away. But as time passes, you better learn how to live with your grief and your pain. I look at my daughters every day and feel overwhelmed with love. Our journey to having them was long, and hard fought. I am a changed woman, but a better woman. Adrian changed me forever. He introduced me to the strongest feeling of love I had ever experienced, and proved to me that we are all stronger than we know. My daughters will grow up knowing all about their big brother, their guardian angel. And my soul will always feel his presence.
If you have questions or comments, you can contact Ashley at firstname.lastname@example.org.