Diagnosis: Spina bifida meningocele and hydrocephalus
My name is Julie. I was 22 weeks pregnant when we got the news of our daughter's condition. She was diagnosed with Spina bifida meningocele and
hydrocephalus. This was my first daughter as I have 2 sons, Stephen is 9 and Charlie is 3.
When we found out we were pregnant with our baby #3, we were over the moon. I just knew she was a girl in there. I could just "feel" it. Unlike
the other two pregnancies, I was so sick! Every smell, good or bad would make me run. I was OK other than that...never really tired which was
strange. With my boys, I was a walking zombie. So I was convinced; it was a girl.
Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there was always that chance of
hearing bad news but I said "no, not me, not our baby." I did have a run in with kidney stones and had to undergo bilateral stent surgery. Not fun,
at all! In all the pain and aches of my body throughout the kidney issues, I did have the best news ever. The ultrasound tech in the ER the night I
had my stone attack gave me the news of, "It's a girl!" I found out early due to my stones. I loved those stones after that! I normally would've
had to wait a few more weeks to find out.
I was miserable physically, but knowing a little baby girl was growing inside was wonderful. My husband and older son are sports fans and I'm
not at all. It was a nice feeling to know that I wasn't going to be the only girl in the house. I would fantasize about doing our hair together,
make-up, and doing fun girl stuff together. I lost my mother so young and I always wished I could have a daughter someday. I was assured MANY times
that she was unharmed from the stent placement surgery and none of these issues would hurt her. That's all I needed to know. Her heartbeat was
strong and everything looked to be on track.
January 22, 2009 was the day it all changed. I had a morning OB appointment and had to go alone as my husband was teaching his class without
having a sub to cover. No biggie, I'm bringing home her first photograph so he'll still be able to see her. I went in for my ultrasound first. The
tech was very nice. She explained everything she was looking at and everything looked perfect. The only problem was getting a good look at her
cerebellum. The ultrasound lasted about a good ½ hour. I didn't think much of it...I knew how squirmy she was when people were trying to get a look
at her. After that, I stepped into the other room to wait for my doctor for my appointment with him.
As I waited, I couldn't help the HUGE smile I had as I stared down at my first pictures of her. Her little face and hands; I got lost thinking
about our future. When the doctor knocked and came in, I practically leaped off the chair I was so deep in thought. My doctor came in, sat down,
and asked me how I was feeling from the stent surgery. I was truthful and said, it isn't a picnic but oh well, it's not forever.
Then the words I'll never forget...first a little sigh and cock of his head he said, "Julie, I'm very concerned with the ultrasound." My face
went numb as I asked for a reason. He went on to tell me that her brain was retaining fluid and causing swelling. Her cerebellum was abnormally
shaped and he thought that was causing the fluid retention. He was telling me that my baby had hydrocephalus. He went on to tell me about shunts
and what not but it was all a fog. My baby is not OK. I had so many questions but he told me to save them for the specialist.
From this point on I was going to have to be seen by the high-risk OB within the practice. I drove home wailing like a baby in tears all by
myself. I don't know how I made it home without crashing. I was hysterical. My husband then came home from school so I could give him the news. I
had to wait all weekend and see the OB on Monday morning to have the official diagnosis after the 2nd ultrasound was performed. It was a more
high-tech ultrasound only the specialist has. Monday came and it only got worse. We were told after the 2nd ultrasound that our little baby girl
also had severe spina bifida. WHY? NO NO NO! Please God No.
It took my husband and I only hours after the appointment to make our decision. That's where the tears started and didn't stop. I had to let my
baby girl go. We couldn't bring this innocent little baby into the world with this many problems. When we were told what she'd have to go through
all throughout her life it was too much to imagine.
She passed away in my belly on January 30th, 2009. I was put to sleep and knew that when I woke up, she wouldn't have a beating heart anymore.
I went through the night to dilate holding my belly and rubbing her as much as I could. My little girl would be taken away the next morning. How was
I going to let go? I simply can't. This is unbearable.
She was taken away as I was asleep once again. With the request of my husband, we just asked that she get a good long physical look by the doctor
and for the nurse to whisper my sad sweet goodbyes in her little ear before she's taken away. I couldn't handle seeing her...it would traumatize me
The doctor said after he looked at her, we absolutely made the right choice. Her little spine was protruding so badly and her little head was
lemon shaped. How could my sweet little girl be so beat up? It isn't fair! The tears are so overwhelming I can barely type.
She was cremated as that's how I want to be when it's my time. Her name is Haven Grace. She was 1 pound. I was in my 23rd week of pregnancy when
she left us. I asked my mother who's passed away when I was 17, to come down with the warmest, softest, pinkest blanket she could find and take her
so she wasn't entering Heaven alone. She's too little to know her way. I know my mother is taking good care of her for me until I can someday.
This experience has changed my life forever. The sadness and the pain I feel is so overwhelming. It can't be put into words. I knew taking her
pain would add to mine so I we knew our lives would be changed forever. I feel so empty and heartbroken that she's gone. I will forever be sad and
will never be complete. Making this choice angered me. Why couldn't He take her, isn't that His job in times like these? Why did we have to play
God? These things went through my mind and I realized something. Everything happens for a reason. As much as I hate that saying, it's true. Maybe
God needed me to get pregnant with an angel because he needed a little girl in particular. Maybe my mother missed me so much that she needed my
baby. I will never know those answers here on Earth. I can only take with me the memories of the happiness I had for that short time with her and
start to pick up the pieces of my heart and my life.
To all the other mothers out there who know that certain sadness and pain I'm talking about...telling our stories is a way of coping together.
I'm very grateful to have this opportunity to write about ours.
We love you Haven.