Jaxon Parker Evans- Raising Awareness for Acrania

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Today we have a guest post from a fellow mom that made the heartbreaking choice to terminate for medical reasons. This post is in honor of Jaxon Parker Evans and helping to raise awareness for Acrania

ultrasound of baby with acrania

Christmas Eve of December 2018, I was doing last minute shopping with a friend. That entire day and the day before I was extremely nauseous, feeling faint, and just plain worn out.

After explaining this to my friend, while in the store, she jokingly says “you’re pregnant, Merry Christmas!”

After she said this to me I stood looking at her in shock because at that moment I had realized, I was very late with my period…approximately 2-3 weeks late. I know, who doesn’t pay attention to that special date each month, right?! But with working so much and the holidays it slipped my mind.

So, I took a pregnancy test home, and that Christmas Eve I had received a very obvious positive result. I was indeed pregnant.

My first pregnancy, as I had tried for over 16 years with no luck.

The sad part was that I was no longer with the partner I got pregnant with. He was now my ex-fiance. We had tried 2 years later briefly to get back together…but that didn’t happen…instead I was pregnant.

I was in complete shock. And also I was extremely worried…considering it was the holidays and knowing I couldn’t get into my OBGYN right away.

I decided the suspense was killing me and December 26 I went to the ER, because I had cramping and was scared. After blood work and an ultrasound, I was indeed pregnant.

I was so excited, I told my mom and we immediately started making plans and doing the things all newly pregnant women do. I was instantly in love with my little he or she.

Two weeks later, I got into my OB. I was 9 weeks and my baby had a very strong heartbeat. All seemed well…though no ultrasound was done that day.

I opted for all of the appropriate testing, seeing as how this was an out of the blue miracle pregnancy. So at 12 weeks I went to my first “official” ultrasound and testing.

When the nurse looked at the same screen I was looking at, I noticed she wasn’t smiling, she wasn’t happy. She looked very scared and said she’d be right back. To me, the screen showed my baby curled up sleeping in my tummy, so I didn’t really think anything of it until the doctor came in.

ultrasound heartbeat picture with text "mommy will always have your heartbeat jaxon"

They then tried to get pics of his head and neck areas for over an hour- still not telling me what they had found. Finally, the doctor asked that I get dressed and come to his office, so I did. I was not at all prepared for what he was about to tell me.

He drew a diagram of a normal looking head and a diagram of my baby’s head. My baby’s head was shaped more oblong, and appeared to show some spots that didn’t look normal as far as his brain and fluid, and his skull wasn’t connecting on top of his crown.

The doctor told me I needed to terminate immediately.

In shock, feeling like I couldn’t breathe, I ran out of there. I called my OB on the emergency line and explained to her what had just happened. She urged me to go to another maternal fetal specialist for a second opinion. So, a week later I did.

This doctor didn’t give me any better news. He narrowed my baby’s defect down to 2 possible conclusions, both being a neural tube defect.

  • One, was Encephalocole, which I had also researched before. I’d seen that there were many surviving cases for this condition. If this was the diagnosis, I would still carry my baby.
  • Two, Acrania- deemed the most fatal neural tube defect of all with no reported survivors.

The doctor set up an appointment for an amniocentesis, and after the results were received, I was sent to an appointment at Children’s Hospital of Philadelphia. At the time of this appointment I was already 18 1/2 weeks with my son.

The appointment consisted of all the fetal testing they could do- from his heart, to his lungs, to his brain, and his head. They had 5 expert doctors all examining ultrasounds, test results, etc.

We all had a meeting at the end of the day and I was told my son had Acrania, and that his spine and neck were only half connected. I was the only thing keeping him alive.

They also told me I had a severe placenta previa and, if he was to pass away in womb before term, I would very likely die. The doctors urged me to make a decision to terminate before 24 weeks, which was the limit here in my state for TFMR (termination for medical reasons).

Sadly, when I realized how much my baby was suffering in my womb and the huge risks involved, I made the heart breaking decision to terminate.

My son was my world, I felt him kick, I felt him hiccup, I monitored his heartbeat everyday at home. Not one moment a day went by that he wasn’t my world- my focus.

To have to give that up while he was still living and breathing in my womb was devastating.

At 20 weeks and 3 days, I had to have a D&E (dilation and evacuation). Due to my placenta previa, no doctor in my state would allow me to L&D (labor and delivery), due to risks of hemorrhage.

footprint with text "you left a footprint on my heart"

So, not only would I have to terminate my pregnancy, I was never going to be able to meet my little boy.

I went in for surgery on 3-22-18. I had the doctor get a foot print and a hand print, and I had the hospital chaplain baptize my son while I was under anesthesia.

When I woke up I was no longer pregnant, no longer had my little boy safe inside my belly.

By far, it’s been the most devastating experience of my entire life. I have a foot print, I have a hand print, I have an urn with his remains, and a death certificate, as well as a baptism certificate.

To bring these items home with me instead of a living breathing healthy baby…I just have no words.

I don’t know if I will ever have the chance at being a mom again, but what I do know is I am a mom to Jaxon Parker Evans, and I am forever grateful for that, as well as the strength he has given me.

Everything I do now is for him in his honor.

I got myself back to work quickly, I speak about Neural Tube Defects with other moms experiencing this same tragedy, and I have set many goals.

Jaxon is my strength. I could have rolled over and died, or given up on life after this experience, but my son…he has brought me through to be better and to keep going.

I now live for him.

By

Nicole Evans

Pottstown, PA USA

To read more stories of others that have made this heartbreaking choice, please visit the Termination of Pregnancy for Medical Reasons page.

And for our full story of Trisomy 13 with April Rey, please visit the Trisomy 13 page.

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Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

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