A Painful Decision

On January 16, 2017 – our lives changed. My husband and I found out I was pregnant. We had been trying for a few months to conceive and we were very surprised that given our age, I was able to get pregnant so fast. We couldn’t wait to share the news. We were going to be parents.

My husband wanted a boy but I had no preference on gender. I just wanted a happy and healthy child who wouldn’t drive us too crazy. My husband and I started making plans. Shopping. Turning my office into a nursery. Thinking about names. Planning who would take care of the baby so I could still work part-time. Looking into starting a college fund.

Besides logistical plans, we began talking about our hopes and dreams for our child. Where would we take him or her on vacation? Which family member would spoil him or her the most? My husband runs a business and how he wanted to make sure to always was home for bedtime. What would he or she be when they grew up?

My stomach started to get larger and larger. Every Sunday morning, we took a picture of my belly so that we could have a log of me getting bigger. My pregnancy was pretty easy. Fatigue, nausea, headaches and back pain. My obstetrician, friends and family all reassured me that these symptoms were normal. It was important to get rest, drink water, eat lots of protein, and take my prenatal vitamin. We did everything we were told. Followed every advice. Read the books and baby websites.

At our sonogram appointments, I couldn’t see the computer screen but I remember seeing my husband’s face light up like a Christmas tree as he watched our child wiggle around. Then the doctor told us “You are having a girl!”. My husband and I were ecstatic. This was becoming more and more real. We were going to have a little baby girl.

We began to shop for girl items. Pick out a name and colors for the nursery. One night my husband asked me “Can you order me a book on being a father to a little girl?”. He wanted to make sure that our daughter had strong self esteem. She knew she could do anything a man could do but even better and that she never relied on any other man besides her father.

Then came our 20 week visit. After my sonogram, the doctor escorted us into her office. “There appears to be some abnormalities in the baby’s brain. I would like for you to go see a specialist.” Our world stopped. We couldn’t believe what we were hearing. How could there be something wrong? What did this mean? What did we do wrong?

We proceeded to make an appointment to see the fetal medicine specialist. At that point, we were no longer able to function. We couldn’t eat or sleep in worry that our dream was over. The specialist did some more tests and also agreed that there was an abnormality. She asked that we get an MRI and meet with a radiologist that specialized in fetal medicine. We continued with hope that this was just doctors being overly worried and that everything would be okay. After a day of more tests, we were escorted into an office. All I remember from that visit was hearing the doctor say “I am concerned about the progress of this child’s brain. If you choose to continue with this pregnancy, you will have a child with severe neurological, developmental and speech delays”. Our child was diagnosed with microcephaly and lissencephaly.

Microcephaly (small brain) involves abnormal cortical development (how cells grow, migrate, and ultimately function within the brain).  Both of these findings are associated with a significant risk for severe intellectual disability, seizures, and cerebral palsy. Lissencephaly is a disorder in which a baby’s brain in smooth and doesn’t develop folds or grooves. It can affect a child’s lifelong neural and mental development.

At that moment I had an out of body experience. I walked out of the doctor’s office and just stood in the hallway staring at the ceiling. None of this made sense. This must all be a dream. Soon my alarm clock was going to go off and it would be time to get up and go to work. But as time proceeded, I realized this wasn’t a dream, it was our new reality.

My husband and I had to make a decision. While we were dating, we had already talked about this. Could we keep a child with severe delays? My husband and I knew that we couldn’t do it. We didn’t have the strength. And we definitely couldn’t bring a child into this world that would have such a poor quality of life.

In the matter of minutes, all our plans were over. Everything was surreal. Just a few days before, we were showing off our nursery to immediate family members. We were scheduled for baby classes. How did that all just disappear so fast?

We were terrified that this meant we would never have a child. Now we had to deal with the pain that lied ahead. The guilt, anger, and sadness of ending this pregnancy. The start of a new reality that involved genetic counselors, testing, waiting for results and educating ourselves about the future. Phone calls and text messages came in from friends and family. Just a few months ago, we had gotten the same outpour of love when everyone wanted to congratulate us on our pregnancy.

I proceeded to make a follow up appointment with my obstetrician to start the process of ending the pregnancy. She gave me the phone number for a family planning doctor. My heart, mind and body stopped when I was told that it was a law in Nassau County, New York that my husband and I were responsible for burying or cremation of the fetus. How the heck was the possible? Hadn’t we been through enough? Why did someone want to add more to our pain and misery? Thankfully we found an amazing doctor in a different county who said this law did not apply.

My husband was starting to think about the pain of losing his mother at young age. I could barely sleep because I could still feel the baby wiggling around. We were still trying to accept everything and mourn the beginning of a new life that we thought would start for us in just a few months. How could our dream slip away from us so fast? We were hoping and praying that we would be given a second chance. How could this happen to us? Everyone we knew could easily obtain their dream of having children. Why were we being faced with such an excruciating hurdle? Did we not deserve a child? Was there something we had done wrong? I spent nights wondering if I hadn’t eaten enough protein or forgotten my prenatal vitamin. Nothing made sense.

After doing a lot of reading online and talking to friends, family, and doctors – we have now learned that many couples have difficulties conceiving a child. Whether it is fertility issues, miscarriage, or having to choose whether or not to terminate. Fetal abnormalities can be due to issues such as genes, chromosomes, infection, viruses, or just a “genetic fluke”. Many families go on to have healthy children and continue their dream of being parents. So many of us spend time comparing ourselves to friends and family on social media. Rarely do people share their painful stories. We hear about the perfect pregnancies, babies, motherhood, fatherhood, and families.

My amazingly rational husband reminded me “If couples didn’t have trouble getting pregnant, then where did the fertility and genetics industry come from? What’s the purpose of all this money spent on these areas of research?”

I want anyone out there who is going through a similar situation to know that you are not alone. Do not judge yourself or wonder why this happened to you? Sometimes it just happens and we can never really answer that question. Do not give up on your dream to have a child. Share your stories with other people so they can be educated about the different possibilities. Instead of worrying about being judged, help to create a sense of awareness. Stay close to friends, family and your spouse. The main thing that has kept my husband and I sane right now is each other. Our marriage has become so much stronger and we know that after this experience, there is no obstacle that we can’t face and survive.

Also, if you are reading this and possibly judging me and my husband – take a moment to think what you would do if you were faced a similar excruciating circumstance. It is hard to make a judgment against someone until you have actually walked a day in their shoes.