31 for 21: Day 6

How Prenatal Testing Saved My Baby’s Life

When I was very young, about 6 or 7 years old, I remember watching a made for t.v movie about a teenage girl, played by a ‘Molly Ringwald type”, who had a little boy with Down syndrome.

She was pregnant again and she was homeless, and I remember this one scene where she had to take a test to see if her next baby would have Down syndrome and what I remember, was the scene in which it seemed that she was being forced to have this test in which a needle was inserted into her belly. Maybe she wasn’t forced and maybe that was my young mind making everything appear extreme at that age, who knows, I don’t remember the name of the movie and I haven’t come across it again since then.

It turned out her next baby did not have Down syndrome and thats about all I remember of this movie.

Squeamishly I watched, and I never forgot that scene, if you know me, you know that I HATE needles, I get woozy around them even. So why would I even agree to have an amniocentesis?

Prenatal testing is not something I planned on doing before I even thought about getting pregnant, I knew it was something that was done I just didn’t think it would be something I needed to get done, I was young and healthy enough to carry a baby with no trouble. My first trimester came and went without any morning sickness and I breezed through it with no problems, I remember thinking to  myself, “if the rest of my pregnancy is like this, the next six months will be easy.”

Famous last words.

13 weeks into my pregnancy one of my ultra sounds revealed that my baby had a marker known to be associated with Down syndrome. I didn’t even know his gender yet, and I was told he had a 1 in 5 chance of having Down syndrome, given the large measurement of the nuchal translucency, which is the back of the neck.

When the geneticist told us this news, she empathetically told us we could end our pregnancy and try again, she said given the large measurement of the NT (an abbreviation for nuchal translucency) our baby also had a chance of being born with a heart defect.

She said the only way to be 99.9% sure was to have an amnio, which meant I would have a needle inserted in my belly to withdraw the amniotic fluid, which contained the cells my baby was shedding. The fluid would be taken to a lab where it would be tested for Down syndrome. Our cells contain all our chromosomes and so the tests would be to see if the extra chromosome was present in my baby’s genetic makeup.

We didn’t answer right away, I was scared, I didn’t want a big needle poking my belly, I was scared of needles but the Down syndrome diagnosis and the heart defect were also scary to me.

It took me a few days to make a decision to go through with the amnio.

If our baby was going to have Down syndrome or a heart defect we decided it would be best to know for sure before we made any other decisions, I was so sure our test would come back negative for Down syndrome, believing the myth that Down syndrome runs in families, there is no one in my family or Logan’s family with Down syndrome.

The day of the test came and it was very eventful, we found out the gender of our baby that day, we were so excited that our baby was a boy, we had already chosen boy and girl names and that day, our baby became Royal, I had a dream he would be a boy and the ultra sound that day confirmed his sex and my hopes for him. I had to have the needle inserted in my belly twice because Royal moved close to the needle the first time and the doctor had to take the needle out and wait a few minutes for him to move before she reinserted it.

I held my breathe the entire time, I felt the needle go through my skin, through my muscles, and through the deepest parts of my belly, where my baby was safe and warm.

The amnio brought on complications, I started losing amniotic fluid and I was put on bed rest for 3 weeks. It was during those three weeks that I received the test results, our baby had Down syndrome. Again, we were told we could end our pregnancy and if we decided to continue with our pregnancy, we could pursue an echocardiogram, which is a detailed ultrasound of the baby’s heart.

We decided to continue our pregnancy, and as told by my husband in an earlier post, this was a sad time for us, we were unsure of how Down syndrome would affect our family and our marriage, we didn’t know what to expect and the visions we had in our heads of what Down syndrome was, were outdated.

The echo, confirmed Royal’s heart defect, he had a complete AV Canal, which meant he had two holes in his heart. First thing, we did once his heart defect was confirmed was start planning for his birth, we planed where he would be born and how his birth would be handled as well as the first days of his life. He would be born in one of the best hospitals in Los Angeles, he would have a whole team of doctors and specialists awaiting his arrival and he would be admitted into the NICU immediately following his birth, where he would have to undergo another echogram of his heart, to see that the AV canal was all he had.

Prenatal testing is not for everyone but it was the right thing for me and my family to do, without it we would have not been as prepared as we were when the time came for Royal’s arrival. I would have hated to be in the dark about his diagnosis. I am glad we live in a time where a diagnosis and heart defect could be detected early on and I am also thankful for the testing that was available to us, prenatal testing saved my baby’s life.


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