Boddie Born Anencephalic

When we decided it was time to have a child, I wasn’t that person that could think about getting pregnant and have it happen. It took me about 2 1/2 years. I remember thinking maybe a child wasn’t in my future. I thought about that for a few days and decided I was ok if it wasn’t meant to be. But that was not the case.

When I realized that I had missed my period, I bought a test, and it was positive. I took six more to be safe. I was happy and scared all at the same time. I went to the doctor, and at 6 to 8 weeks, I had my first ultrasound. There was our child on the screen, a tiny little person. We were told everything looked good. The ultrasound pictures were printed out for us. When we got into the car, my husband commented that the head didn’t look right. I looked at the picture, said I think it’s just the position, and never gave it another thought. 

At 18-20 weeks, we were able to find out the sex of the baby. We gathered the family and in we went. It was a boy, yes! The men and dad were overjoyed as well as me. Again, pictures were printed, and everything looked normal as far as his growth. Now we wait. My pregnancy was great, no issues, he moved all the time, gave me heartburn, stomped on my bladder, did cartwheels…all the normal stuff.

As the due date came closer, we got the room ready, picked a name, and anticipated his arrival. I was almost two weeks past my due date and had no signs of going into labor. I went to the doctor, he thought he might be breech, and I was sent for an x-ray. About an hour later, the doctor called me and said we needed to come in for an ultrasound. I went in for an ultrasound, still thinking they just wanted to have a better look. The vibe in the ultrasound room was off, and the monitor was turned so we couldn’t see it. The ultrasound tech wouldn’t talk to us. About 10 minutes after the ultrasound, we were taken into this green colored room, and the bomb was dropped. Your son has a birth defect incompatible with life. I went numb. I was in complete shock because I had zero issues with the pregnancy. He grew and moved normally, and the heartbeat was always normal. The doctor continued to talk, but I stop listening. We left still trying to process what we were told. I couldn’t even pronounce the name of the birth defect, let alone understand why this happened, and why it wasn’t caught in my previous ultrasounds. The doctors where we are located didn’t know too much about this birth defect, but they were able to find some information for me. We requested a second opinion. We went to UCSF, and there on the 3D screen, we saw the birth defect. They were able to explain what and why this happens. He was anencephalic, having the cerebral hemispheres and a large part of the skull congenitally absent. It occurs when folic acid is low at the very beginning of the pregnancy, before you realize you are pregnant and begin taking the prenatal vitamins.

On August 7, 1998, I went in for a c-section. I had the option of natural birth, but it could have been a 20 or 30-hour labor because the cerebral hemispheres, a large part of the skull, were congenitally absent. I didn’t want to put him through that and opted for the c-section. That wheelchair ride to surgery was the most gut-wrenching ride of my life when it should have been one of the happiest days of our life. I went completely under. This was my first time having surgery, and I didn’t know if I could handle being awake and dealing with the emotions this moment was going to bring. This left my husband to deal with his emotions and see our son born alive or dead. Super selfish on my part. All the family was there to meet him and say their goodbyes. I had a really hard time waking up from the anesthesia, and I didn’t get to see him alive, but I still held him for a long time when I was able to wake up. We took some pictures. It was such a surreal moment. I didn’t want to let him go.

Boddie lived for close to two hours after his birth, and those memories are so priceless. I don’t talk about this much. Most of you probably thought we just had Jaeden, who is now eighteen and in college. She is our biggest blessing, love her to the moon and back!

I wasn’t ok for many years. If I had to guess, it was close to six years after his birth. My emotions were all over the place. I was sad, so angry, and I hated god because I didn’t understand what I did that was so bad that I deserved this! Finally, after close to two years, I sat down and read a book my friend gave me called Good Grief by Granger Westberg. Wow, I felt like I was going crazy when it was grief. Grief has many stages, and I went through every one of the stages. Twenty-one years later, I’m better, but I can remember everything and every feeling to this day. It’s engraved in my soul. I wanted it to be a dream, and I wanted him to defy the odds, I wanted him to live! He was given to us for a short time, and he touched our lives in so many ways. I carry him in my heart now and know that one day, I will see him again.

I’m writing this today, August 2, 2019, because Wildwood Days had a role in helping us get through those first days after the diagnosis. Wildwood Days mark a tough time in our lives and a time of so many good times. You won’t see me cry. I’m not big on showing my emotions, but know I’m thinking of him always, this weekend especially. It’s a weekend that changed our lives in a variety of different ways, as our son did. ❤️

A mother only holds her children’s hand for just a little while…… their hearts forever. 🎈💕

By Lisa W 

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4 thoughts on “Boddie Born Anencephalic”

  1. Wow I am so impressed by your honesty . I was one of the lucky few who got to hold Boddie it was a day and memory I will carry with me forever . Thank you both for allowing me to be a part of that day . Lisa Davenport-Wilson wow

    • Thank you Lisa for sharing your experiences with feeling and love. I kept thinking of my two pregnancies and how attached we are as mommies when we feel our baby inside us and love the little growing bean from conception! Your words on grief are also so amazing to hear; that’s what people usually don’t want to talk about and one of the hardest cycles of our/my life(s)!

      When I first starting reading the Tibetan Book of the Dead I had a hard time with the cyclic nature of dying and rebirth but as I have read through it and applied it to my life and as I read stories like your own, it makes me believe beyond measure and more than I ever could imagine, every life no matter how short, has purpose, meaning and unconditional love.

      Thank you for sharing and in doing so helping everyone with grief.


  2. Thank you for sharing your story. My heart is sad for you and Shane. You are both so amazing and raised a beautiful daughter. I am glad you have the reassurance you will see Bodie again. May God bless you always. Love to you always.

  3. Lisa.. all this time, I’ve been so blind to my own grief, I had no idea how you must be feeling everytime I talked to you. I am here if you need to talk… Hugs


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