Pregnancy Story: When I heard “It’s a rare neural tube disorder…”4 min read

Pregnancy Story: When I heard “It’s a rare neural tube disorder…”4 min read

Year 2017 was a very emotional and hard year for us.

We found out we were pregnant on our older daughter’s 2nd birthday.

It was so exciting for us because we had decided that it was the right time, especially since Arya was turning 2.

The first few months are always rough and so were mine. I was constantly sick and unlike the last time with Arya, my sickness kept me from taking my prenatal pills or keeping any food down. I knew nothing well would come out of it.

Then, March rolled around, and I faced the most difficult time of my life.

My beautiful and most loving father passed away on March 7th.

It was a huge shock for me. 🙁 My heart belonged to my dad. He was my best friend and buddy, and I owed everything I am to him. I was his baby and he was my guide post for everything.

. . . . . .


I miss him so much every single day.

Some days, the pain is unbearable, and other days, I survive. They say time heals all wound, but I feel like it is the opposite for me. With time, I feel even worse.

His loss feels so surreal that at times, I just pick up the phone with a hope that I will find an old voice mail, so I can hear his voice one more time. His face roams in front of my eyes and some nights, I lay awake thinking about him and crying.

I keep rewinding our last conversation in my mind and I keep thinking about all the beautiful things we shared and did together.

My father was my hero, my big strong hero who never let me down.

Then tragedy struck again, in March itself.

A week after my father’s passing, I had my genetic testing ultrasound done. I went into the doctor’s office to get the results and another shock hit me!

The doctor said that our baby (12 weeks pregnant then) had anencephaly. Anencephaly is a neural tube defect where a huge portion of the brain, skull, scalp has not developed.

As soon as the doctor said that I felt like my feet were suddenly paralyzed. I could not move, and that numbness started moving upwards where my entire body felt like it was frozen.

The doctor went on to say that it was a very rare form of neural defect and that it was not something that could be fixed or would get “better”. He went on to discuss some causes stating that sometimes it was genetics, while other times the lack of folic acid in the early stages of pregnancy. Since we already had a healthy child, he said it could be the lack of folate. Despite that sometimes something goes awry in the cell division and/or embryonic stage which can also lead to neural tube defects.

When I finally found my tongue, I started crying and just saying “no”. He was very empathetic and comforted me, and advised me to discuss this further with my OB. I cried my way out like a little kid, and all the way home.

When we were expecting the first time, I had done so much research on neural tube defects. I took all the pills and kept praying that everything would go well.

And it did!

This time around, due to heavy morning sickness, I missed a lot of my prenatal pills thus causing a major decrease folic acid from my system. That was the only thing I could think of. And of course, that meant, I was going to blame myself.

It was my fault.

I took this pregnancy for granted. I knew that I had already had a baby once and successfully, and the second time around was going to go the same way. Normal and smooth!

Our OB gave us more information on the ultrasound results. She stated that even if we decided to carry the pregnancy, there was a very high chance that the baby will miscarry on its own in the next few months. She gave us more options and scenarios about how it could be, and what could happen. And advised on a D and C (Dilation and Curettage) Procedure as soon as possible. She advised that the later we do, the more emotionally attached I would be and it would not be healthy for me. Basically, we were going to miscarry the baby! ☹

It was the hardest decision for my husband and me. Everyone called it a fetus but to me, it was my baby; 12 weeks or 40 weeks.

We were miserable and confused and did not know why or how to react to all this, and after much discussion, and a second opinion on the ultrasound and all the results, we had the D and C Procedure at the hospital.


. . . . . .


Why and how could this happen?

What did I do wrong?

These questions plagued my head day and night.

My husband was quiet yet supportive, and I knew that he was hurting equally but not showing it. Everything happens for a reason, they say!


Well, that is what we were hoping for, waiting for.

A reason.

A reason to move ahead, and be okay again.

And we got that reason, several months later…!



Additional information on Anencephaly

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