I am not a writer.
You are reading this on my brother’s blog. He and many other people in my life are much better at writing than I am. I have written for years, but it has always been for my eyes only. Writing is very personal for me and I tend to be very guarded with things that are personal to me. This is not only the first time that I am sharing something I wrote, but also the first time that I am openly discussing a topic that is very personal to me. Why now? Who knows. But here it goes.
On June 6, 2015 I gave birth to a baby girl – Vivian. While not complicated, Vivian didn’t make it easy. I was exhausted. Drew (my husband) was exhausted. But after what seemed like an eternity, she was here. Her cord was cut and I was told that she was in fact a she.
After Vivian was born she was not placed on my chest so that I could meet this person that I had spent that last 9-10 months growing. Instead, a neonatologist and his team took her to a warming unit not far from my bed to evaluate her. Drew ran over to snap a few pictures. Thankfully, not long after she was in my arms. The neonatologist came over, grabbed my hand and told me that she was okay. Not okay, actually.
We all have moments in our lives that are etched in our brains. No matter how much time passes, every detail can be recalled as if this moment happened just seconds ago. One of these moments for me is this man holding my hand and reassuring me that my brand-new daughter was perfect.
Why was there a neonatologist present for Vivian’s delivery? Why is this memory (one of hundreds from that day) so vivid?
To answer these questions, I have to go back to the winter of 2015, before Vivian was born.
I was 27 weeks pregnant when the doctors first suspected that Vivian had Agenesis of the Corpus Callosum (we’ll call it ACC for short).
What the hell is ACC, you ask?
Yeah – Drew & I asked the same question. In fact, it took us months to fully understand what this diagnosis meant.
I’ll be Dr. Google for a minute. The corpus callosum is the largest connective pathway in the brain. It is made up of more than 200 million nerve fibers and allows communication to pass between the two hemispheres of the brain. You reach for something on your left side with your right hand. Your corpus callosum helped make that happen. Taking reciprocal steps? – left foot, right foot, left foot, right foot. Thank your corpus callosum. A disorder of the corpus callosum is a condition where the corpus callosum does not develop properly. Individuals diagnosed with ACC have one of two types – Complete Agenesis of the Corpus Callosum (C-ACC) or Partial Agenesis of the Corpus Callosum (P-ACC).
What causes ACC? There isn’t a simple answer to this question. The list of causes range from prenatal infections to viruses to genetic abnormalities.
For Vivian it was genetic. Testing done when she was 9 months old revealed a genetic mutation. The doctors can’t say exactly, but they are almost positive that this caused her corpus callosum to not develop. Drew and I both had testing done to see if one of us passed on this condition to Vivian. We didn’t.
ACC can only be diagnosed by a brain scan- ultrasound, CT-scan or an MRI. Vivian’s ACC was first suspected when I was 27 weeks pregnant, but was not made official until I was 32 weeks pregnant. After that appointment Drew & I were immediately sent to see a genetic counselor who proceeded to paint a hypothetical picture of what this diagnosis could mean for Vivian.
The counselor was a very sweet woman and did her best to calm me down while I sobbed in her office. I know she said a lot during that meeting, but ultimately what I remember is that we wouldn’t know anything for certain until Vivian was born.
For me, and for a lot of the parents that I have connected with since we received Vivian’s diagnosis, the unknown is the worst part.
There is no way to know how this disorder will affect our children until they start to grow and develop. To this day, I do not know what will happen. The list of possible outcomes is extensive. I could go on and on about what could have been, or what might be, but for now, my mind floats back to the neonatologist holding my hand assuring me my daughter was okay.
Not okay, perfect.
The final 8 weeks of my pregnancy flew by and were simple. Family & friends hosted two beautiful baby showers. We bought a crib & a stroller. Vivian’s room was sort of set-up, but not decorated. Along with this excitement there were a lot of doctors’ appointments & ultrasounds. Our small team was monitoring Vivian and trying to arm us with as much knowledge as possible. Or prepare us.
Finally, after an exhausting 24 hours of labor and weeks of wondering what might be — there I was, holding my new baby with a doctor telling me “She’s okay. She is perfect.” His words, not mine.
To this day I can hear him, with his very heavy Middle Eastern accent speaking those words to me while he smiled and held my hand. She is perfect. I can still feel that hand squeeze today. Every time I think of it I start to cry.
Vivian turned 3 last year. She took donuts to daycare and we took her out for dinner. Vivian got messages from family and she opened a few presents. It was a nice day. A happy one. But on a day that was so happy and celebratory, I found myself holding back tears. I was emotional & on edge.
Why? I got caught up thinking about Vivian’s life and what it could have been. I think about how lucky we are that she is thriving and developing as if nothing is wrong with her precious little brain. I remember telling myself to knock it off, to stop dwelling and just be happy. I was happy. But the emotions of what could have been caught up with me.
I sent a message to a woman named Sarah that I connected with on Facebook in 2015. She lives in Australia and has a daughter one year older than Vivian who also has ACC. Her daughter and Vivian are almost identical. Both diagnosed with a complete absence of a piece of their brain and yet have shown no sign of this condition affecting them. Both little spitfires.
Sarah & I are members of a support group for parents of children with this condition. Parents in this group are from around the world. As a group we have learned how to help our little ones or how to work around the ever-so-complicated healthcare systems in our various countries. We celebrate each others triumphs and offer support during the lows.
There are others like Sarah & I with children that are thriving despite the diagnosis, but there are also parents who are not so lucky. Their children have experienced severe deficits and other medical problems. Some have had to bury babies.
While not my reality, this last piece was something that was in the back of my brain during the last 8 weeks of my pregnancy. I did my best to keep the negativity at bay, but the thoughts were always there.
Will my child be okay? Worse — will I have to bury her? Morbid as fuck.
I opened my message to Sarah with a question. “How did we get so lucky?”
Sarah’s reply was exactly what I needed. She gets it. At the end of her message she put it so simply.
Our girls are medical marvels.
She is right. Vivian is a medical marvel. Sarah’s daughter is too. Sarah describes the girls as having magic brains. One that has found a way to work as if nothing is wrong, despite missing a major piece. No doctor can explain it. And she is right.
Despite Sarah’s reassurances, I woke up the day after Vivian’s birthday still feeling really emotional. So I sat down and wrote this.
Drew & I don’t know how or when we will tell Vivian about her condition. We will have to someday. It could affect how she learns in school, she might need extra assistance. Since her condition is genetic there is a 50/50 chance she will pass this long to one of her children, if she chooses to have them someday.
Words cannot explain how strange it is to look at your newborn and listen to someone tell you about the obstacles surrounding her having children someday. Weird.
These are things we will deal with someday. Not now. These days are for playing and enjoying Vivian being Vivian. Some days are easier than others. It is easy for all of us, myself included, to get caught up in the daily grind and forget to appreciate the good in life. Of how lucky we all are. Of how close we can all be to a much worse situation. On the days that I struggle, I have Vivian. My sweet girl is my constant reminder to get out of my head and enjoy the craziness that is life.
And on the days that I really need a boost, I think back to the day that she came into my life and that wonderful doctor telling me…
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