Our sweet genetic counselor took a history of any and every illness present in both of our families. We had a wide range of cancer, cystic fibrosis, heart disease, etc. She also took note of any still born births, miscarriages, or infertility history within our families. After everything was said and done, she offered us a very expensive genetic test where she would test both me and Joseph on a deeper chromosomal level. The test could explain if one or both of us were genetic carriers for this birth defect or if it was simply a mutation from the fetus developing.
We thought about it long and hard. We weighed the pros and cons of having this test done. Meanwhile, I searched anything and everything I could find on the internet, knowing full well, I could either find great comfort or more grief. Luckily for me, it was hard to find exactly what I was looking for. I think it was a way of the universe saying that I needed to have more patience.
Children born without fibulas is a condition known as Fibular Hemimelia. It's defined as a "birth defect where part or all of the fibular bone is missing and there are associated limb discrepancies, foot deformities, and knee ligament problems. It occurs in only 1 in 40,000 births. Bilateral fibular hemimelia (affecting both legs, like our sweet Eleanor) is even rarer."
My biggest question: What will her future look like? Will she need a wheelchair? I searched blogs, Youtube videos, hashtags, anything and everything I could get my hands on so I could prepare for her future. I found everything from amputation to limb lengthening . When I read the word amputation, my heart sunk. I couldn't bare to have my child's legs amputated. Later, I stumbled across a video on Youtube of a 19 year old girl from New York who has Bilateral Fibular Hemimelia. It was a super short video of her story. She said her doctors recommended amputation and her father disagreed. They found another alternative so she could keep both her legs. I have no idea what the alternative was, all I knew was that there was hope for my baby, just like this girl. There's no way I could let my baby's legs be taken.
My doctor recommended more tests so we could further understand Eleanor's condition. We had an amniocentesis scheduled. My mother had one when she was pregnant with one of older sisters, so she was able to help me somewhat prepare for it. They took a big long needle and inserted it into my belly to retrieve amniotic fluid for testing. I remember laying on the chair holding onto Joseph's hand as the needle was inserted into my huge pregnant belly. I couldn't help but have silent tears escape from my eyes. As I laid on my back staring at a horribly blank ceiling, two tiny streamlines ran from my eyes to my earlobes, making salty puddles inside my ears. I tried discreetly wiping my ears. Joseph asked if I was in a lot of pain. No, it wasn't that bad. Uncomfortable yes, but not enough to make me cry. To be honest, I just couldn't help but stare at this dumb white ceiling wondering why I had to be here for this test. Why couldn't I just have a normal uncomplicated pregnancy? How many women go through this? Surely, there are women out there going through the exact same thing as me. Where are they? How can I connect with them? Another cycle of "woe is me" began to take over and I cried more because now my ears were soaking wet (stupid hormones).
Never have I received so much love and support from people all around me. So much kindness was shown toward my growing family, it truly brought comfort to my soul. I really think that with sorrow comes support. I believe it's natural for humans to want to help each other. I got pretty good at pushing some people away and not answering phone calls or texts. Eventually I gave up and started letting people help me, comfort me, and show sympathy for me. There's no greater comfort and relief than knowing you're not alone.
Eventually I was able to find my Fibular Hemimelia support group. It was like the heavens opened and I was able to have personal intimate conversations with women across the country, even across the world about their journey, just like mine.
And somehow by some miracle, months down the road, I made a 180 degree change and the idea of amputation didn't seem so scary or bad.
My biggest question: What will her future look like? Will she need a wheelchair? I searched blogs, Youtube videos, hashtags, anything and everything I could get my hands on so I could prepare for her future. I found everything from amputation to limb lengthening . When I read the word amputation, my heart sunk. I couldn't bare to have my child's legs amputated. Later, I stumbled across a video on Youtube of a 19 year old girl from New York who has Bilateral Fibular Hemimelia. It was a super short video of her story. She said her doctors recommended amputation and her father disagreed. They found another alternative so she could keep both her legs. I have no idea what the alternative was, all I knew was that there was hope for my baby, just like this girl. There's no way I could let my baby's legs be taken.
My doctor recommended more tests so we could further understand Eleanor's condition. We had an amniocentesis scheduled. My mother had one when she was pregnant with one of older sisters, so she was able to help me somewhat prepare for it. They took a big long needle and inserted it into my belly to retrieve amniotic fluid for testing. I remember laying on the chair holding onto Joseph's hand as the needle was inserted into my huge pregnant belly. I couldn't help but have silent tears escape from my eyes. As I laid on my back staring at a horribly blank ceiling, two tiny streamlines ran from my eyes to my earlobes, making salty puddles inside my ears. I tried discreetly wiping my ears. Joseph asked if I was in a lot of pain. No, it wasn't that bad. Uncomfortable yes, but not enough to make me cry. To be honest, I just couldn't help but stare at this dumb white ceiling wondering why I had to be here for this test. Why couldn't I just have a normal uncomplicated pregnancy? How many women go through this? Surely, there are women out there going through the exact same thing as me. Where are they? How can I connect with them? Another cycle of "woe is me" began to take over and I cried more because now my ears were soaking wet (stupid hormones).
Never have I received so much love and support from people all around me. So much kindness was shown toward my growing family, it truly brought comfort to my soul. I really think that with sorrow comes support. I believe it's natural for humans to want to help each other. I got pretty good at pushing some people away and not answering phone calls or texts. Eventually I gave up and started letting people help me, comfort me, and show sympathy for me. There's no greater comfort and relief than knowing you're not alone.
Eventually I was able to find my Fibular Hemimelia support group. It was like the heavens opened and I was able to have personal intimate conversations with women across the country, even across the world about their journey, just like mine.
And somehow by some miracle, months down the road, I made a 180 degree change and the idea of amputation didn't seem so scary or bad.
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