Pregnant With a Diagnosis

Pregnancy microcephaly experiences
Carrying a baby with a scary diagnosis puts life in a different perspective.
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I was 26 and pregnant. It was our first baby and I was a little scared as I wasn’t quite ready to bring a life into this world; but who is completely ready for the unknown? We had just bought our first home, a semi-custom in a planned development and watched the house emerge from the dirt being built to our specifications. We visited week after week watching the progress and even buried a quarter in the foundation for good luck. We were so happy to have this new nest, and welcome our baby in a warm loving home with lots of laughter, happiness and our traditions and heritage to pass on.

It was about 10 weeks into the pregnancy when we found out that something was wrong. The ultrasound technician looked at the screen twice and then looked again. She was quiet and excused herself as she walked out of the room. A few minutes later she walked in with a doctor who was wearing a white coat and had dark eyes and a heavy beard looking serious. He briefly greeted us and looked at the ultrasound, did some measurements drawing lines from one point of the screen to another, repeating this process multiple times. Finally, he stood up and said that he needed to speak with us in his office. My heart pounded, I felt a lump in my throat, and I think I was shaking a little as I stood up and straightened my clothes. As we sat down in the chairs opposite to the big cluttered desk, I expected the worst. Obviously, something was wrong, and my mind was racing imagining all the possibilities one worse than the other. “Your baby’s brain is not developing correctly, it is called microcephaly.” – hearing this was foreign to me and I was hanging on some hope. Sure my baby will be okay… we will be fine… right? “This could cause severe developmental delays” – he continued – “and may not make it through birth” I was stunned. How could this happen? I did everything right; I got married to a good guy, we bought a nice home in the suburbs close to my in-laws, I didn’t drink or do drugs, I had a good job, I was young and healthy … so why me?

He said that we had choices if we wanted to discuss terminating the pregnancy or provide more information on what to expect if we decided to keep it. Well it will not be terminated, because it is a little girl, and it already has a name: SONIA, and it is my child. I was angry. I was angry at the gloomy looking doctor, at the diagnosis, at the prognosis, at the whole world. Nevertheless, we thanked the doctor and headed home in a state of shock. I was still hanging on the possibility, the slightest sliver of hope that it was all a big mistake and everything will be fine. I guess I was in denial, but one day as my husband and I were painting and decorating the nursery, I finally broke down. It hit me that she may never see the Winnie the Pooh borders we just put up on the walls, or the big stuffed bear in the corner of the room. She may never lie in the soft little crib with Piglet, Tigger, Eeyore and the others painted on the sheets and blanket.

It dawned on me that I even had to consider the option to keep this child, that these thoughts were even put in my head, and that she may not survive through birth. I read somewhere that these children, if they survived birth, were not allowed to go home with the parents, but were left in institutions or were sold as exhibits for traveling circuses. I started bawling … we both did. We sank to the floor and held each other in all our sorrow.

A few weeks later I started feeling her little kicks and hiccups, saw her little foot poking under my skin when she was stretching, giving me a sense of calm. I knew that as long as she was inside of me, she was fine and I could protect her, that she was alive and well. I sang to her and read her stories, I was already her mom and she was my child. I didn’t want to give birth to her, not yet. I wasn’t ready to face the reality that I may lose her. I wanted to carry her forever making sure that she was well nourished, warm, comfortable and loved.

I dreaded it but the day came and we had to rush to the hospital one evening. It was inevitable, and I had to give up on my silly dream of being pregnant till the end of time. After being in labor for several hours and being exhausted from giving birth I was intently listening to the sound; the sound that means life, the sound that means I have a family, the sound that will make me a mother for real. … After what it seemed like a lifetime, I finally heard it; from the top of her lungs, from deep within, she let the world know that she is a fighter and she will survive. Tears trickled down my cheeks and I took a deep breath too not realizing that I was holding it back.

Relieved and smiling I held my arms out for my baby girl. She had a small head typical of microcephaly babies, but she was beautiful to me. She was my little angel, my miracle, and I knew that we would be okay. That whatever the future will bring, I will be by her side fighting our way through life. She looked at me and we made a silent deal; she will keep fighting as long as I’ll fight with her. She calmed as she nestled into my embrace and fell asleep.

Carrying a baby with a scary diagnosis puts life in a different perspective. I went through all sorts of emotions, but at the end I had to accept reality. No matter the outcome, there was nothing I could do to fix the situation. All I can do is keep my promise and fight for my daughter. No matter what the circumstances are, no matter the obstacles, we struggle through. We win some battles and lose some but always keep on surviving.

 

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