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Arthrogryposis Amyoplasia- The Story of Emilia

Arthrogryposis Amyoplasia- The Story of Emilia

I remember the sheer shock and exhilarating beat of my heart pounding through my chest as soon I saw those 2 pink lines. I was 21 years old, on the precipice of a declining romance with my now husband.

We were not expecting getting pregnant so soon after hitting rock bottom in our relationship but, as life tends to happen, we were blessed with a miracle.

After the shock of finding out we were pregnant the pure excitement and unconditional love filled us both in a way we never could have imagined.

We fell in love with our little bean so fiercely that the world stopped.

At our 12 week ultrasound things got a little nerve racking during the ultrasound- it was too lengthy and too quiet.

My partner and I exchanged timid looks and gazed in awe at our little bean in the screen.

The tech left and what seemed like hours later our doctor came in and gave us the very first earth shattering news.

Gastroschises… ok this is fixable. This is nothing that we can’t over come or fix- we will get through this.

Our next step was finding a specialist in this diagnosis- our tiny town of population 10,000 had no surgeons, so we went south to my partner’s home town, where family would be near and amazing surgeons were available.

Our first appointment with our doctor was all about the diagnosis. We were expecting the confirmation and the steps to move forward.

Little did we know that our doctor had news for us that would keep us questioning what was wrong, even though he needed to confirm it at our next appointment, 3 weeks later.

The only hope we got from that appointment/ultrasound was that our baby was a girl.

I immediately called her Emilia and that became her name.

We had a babymoon planned before that appointment to Barcelona, our last hoorah before our lives would change for the better- we hoped.

Back in the states and on our way to our next appointment, we got to see our bean on the screen.

We saw her beautiful little face. But we also saw lack of movement and her tiny fragile little body sitting Buddha style, contorted and as if she was in pain.

We knew something was wrong- something much worse that just her intestines floating outside her body.

After the ultrasound, we were taken to a big room with a table too big for just us.

Our Italian doctor spoke to us about what he saw and what concerns he had.

First he said the words “arthrogryposis” I instantly started hyperventilating and crying, because I knew from my brief medical terminology class that something was terribly wrong with her joints.

The doctor and his colleague asked if I needed a minute. Of course, I needed a million minutes to breathe as my partner looked at me wondering what the hell he meant by that word.

And I could only mutter that “she is broken her bones, her joints are all messed up”.

Moments later the doctor came back and explained everything to us. He explained how almost every joint in her little body was crooked and contorted, that she had a slim chance of making it full term, and, if she was lucky, she would spend her entire life having surgery after surgery just to look somewhat normal.

Everything that follows is a blur of insurmountable sadness.

My partner spoke the words- abort. I remember saying no I have to protect her for her whole life no matter how short it is.

In the days that followed I was torn with what was right and what was wrong.

As each day went by I new she was growing and I needed to make a decision for us.

I remember laying down in bed with a sudden urge to dance and jump and scream. I put some music on- and danced as hard and as crazy as I could, rubbing my belly talking to Emilia. It was as if she spoke to me and gave me a glimmer of relief.

I knew I had to let her go.

Her time with me wasn’t enough, but there was a purpose that I’m still waiting to find out.

The months and years that followed her death were the darkest and most miserable of my life.

But now almost 5 years later, I have 2 beautiful healthy babies who have their older sister watching out for them.

My husband and I regularly talk about Emilia- like how old she would be on this day or what she would have been. We’ll never know- but one thing that will never change is her presence- always near yet so far.

This story was submitted anonymously. If you are interested to share a story as well to help others, it can always be anonymous if you so choose.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

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