Today is the 5th anniversary of my first daughters due date, so I thought I would make a post about her.
She was a beautiful little 8 pound 8 ounce red headed bundle of joy! All I ever wanted out of life was to be a mom. Never really had the 'Dream Wedding' and Prince Charming to sweep me off my feet, dreams; my main goal in life since I was a babe myself was to have a bunch of kids and be a great mom. So, the day I found out I was pregnant was the happiest I had ever been.
Then about 4 months into my pregnancy we were sent to a specialist to have a closer look at a few things, while there we found out that we were having a girl, I was ecstatic! After the ultra sound we were sat down in a room where the specialist came in and told us our daughter had Anencephaly and that it is 'incompatible with life'. There was a blur of talking about our 'options' and other things. It was the absolute worst moment of my life.
We decided to carry to term, though it wasn't much of a 'decision', her dad and I dont believe in abortion so, there wan't much of a 'choice' to be made. We would carry her as long as possible. Which ended up being nearly 2 weeks passed the due date. I went in to be induced the first week of January and after 5 days of that not working, we finally had a c-section on January 9th.
She lived for 8 days.
Anencephaly is a neural tube defect [NTD], it happens in the first month after conception. No one knows why NTDs happen. It is believed that high amounts of folic acid will reduce the risk, but no one knows for sure how to prevent it and there is no cure. As the neural tube [basically your spine and skull] is forming it folds over on its self, over and over and over. At one point the ends close up and form both ends of your spine, one end being your skull and the other end being the end of your spine. But, it is possible for one or both ends to not close. If one end doesnt close it causes Anencephaly, if the other end doesnt close it causes Spina Bifida. With Anencephaly the end doesnt close, therefore the skull doesnt form properly and because the skull doesnt form, the brain doesnt form properly. As with all things there are different degrees to this effect, some skulls form more than others, some not at all. Some babys pass away in utero and some live for hours/days/weeks/months and in one or 2 cases even years.
Statistically speaking, most babies die in utero or only live for a few minutes after birth, but I personally feel those 'findings' are a bit corrupt. Based on the fact that lost of people decide to end the pregnancy, either through abortion or inducing very early. If you google Anencephaly you will find that it says 'Most babies only live a few minutes after birth or die during labor', what most of those sites dont state is that most of those babies are being induced around 20 weeks. Im not saying that all babies carried to term will live 8 days or 8 months, I'm just saying its possible. Also, most women who get this diagnosis have never even heard of Anencephaly and are only going by their doctors orders or the crap they read on medical sites, I just want people to have a few more facts. I know of quite a few women who regret their decision to terminate or induce and were only doing it because their doctor told them the baby was in pain or that their own life was in danger and that they needed to end the pregnancy immediately. Then they find out months or years later that they could have carried to term and possibly held their baby alive. Its hard enough to live with the fact that your child died, but then having to deal with that extra regret later on is nearly unbearable.
I cant guarantee anything for anyone, but if you are pregnant with an Anencephalic baby and you dont know what to do I want you to know the facts about my daughter:
She cried when she was born.
She breastfed.
She wouldnt take a bottle or pacifier.
She peed.
She pooped.
When someone else was holding her and she heard me speaking she would turn to look for me.
She slept.
She was awake.
She had baths.
She knew she was loved.
She lived for 8 wonderful days.
I cant promise the same for your baby, I can only tell you my experience, I dont want anyone to get their hopes up or feel cheated if their baby passes away sooner, I just dont want anyone to make any misinformed decisions and regret it later on.
We ended up naming her after a song called Laura by one of our favorite bands Flogging Molly.
Im gonna post the lyrics and a video of the song below. This tattoo is in memory of my sweet Laora and also my uncle who was killed in a car wreck [the angel wings were drawn up by my aunt,his sister, and a few of our family members have them], I got the wings and the Anencephaly ribbon at the same time [my aunt did them] and I got the foot prints/name/dates as a birthday present to myself last year. Next I will be adding a few lyrics from her song.
Laura by Flogging Molly
This next song is about a young lady called Laura
Who unfortunately isn't with us anymore
But she's still called Laura
...Here we go...
Feel the words from my lips
To your harsh finger tips
Then you know where I come from
Cause I know, yes I know
Everything there is to know
Cause I lost everything I had
You see I,
I could have danced on the sun
But my world came undone
(Laura)
Laura!!!!!!!!
There's no need for tears
Cause there's no need to cry
The love that you leave
Will never be left behind
This pain in my head comes straight from my heart
No woman alive could touch who you were
So bye, bye Laura
There's no one could take your place
Bye, bye Laura
Your beauty will never fade
The seed that you sewn
Now reaches for the sky
The song that you leave
Will never beat at night
And after this song, her spirit lives on
Though your not around you'll never be gone
So bye, bye Laura
Cause no one can take your place
Bye, bye Laura
Your beauty will never fade
But I... I could have danced on the sun
But my world came undone
Laura
Yeah, I... I could have danced on the sun
But my world came undone
So, bye bye Laura
Yeah, bye bye Laura
This pain in my head comes straight from my
heart
No woman alive could touch who you were
So bye, bye Laura
There's no one could take your place
Your beauty will never fade
So bye, bye Laura
There's no one could take your place
Bye, bye Laura
Your beauty will never fade
Fade!
Yeah!
Who unfortunately isn't with us anymore
But she's still called Laura
...Here we go...
Feel the words from my lips
To your harsh finger tips
Then you know where I come from
Cause I know, yes I know
Everything there is to know
Cause I lost everything I had
You see I,
I could have danced on the sun
But my world came undone
(Laura)
Laura!!!!!!!!
There's no need for tears
Cause there's no need to cry
The love that you leave
Will never be left behind
This pain in my head comes straight from my heart
No woman alive could touch who you were
So bye, bye Laura
There's no one could take your place
Bye, bye Laura
Your beauty will never fade
The seed that you sewn
Now reaches for the sky
The song that you leave
Will never beat at night
And after this song, her spirit lives on
Though your not around you'll never be gone
So bye, bye Laura
Cause no one can take your place
Bye, bye Laura
Your beauty will never fade
But I... I could have danced on the sun
But my world came undone
Laura
Yeah, I... I could have danced on the sun
But my world came undone
So, bye bye Laura
Yeah, bye bye Laura
This pain in my head comes straight from my
No woman alive could touch who you were
So bye, bye Laura
There's no one could take your place
Your beauty will never fade
So bye, bye Laura
There's no one could take your place
Bye, bye Laura
Your beauty will never fade
Fade!
Yeah!
Hi Kasi thanks for blogging this info. Back in 1971 my parents were expecting a baby girl only to be told like yourself that she had Anencephaly and would not survive. My mum didn't get a choice she had to carry to full term. Go into a ward full of mums with their new babies, knowing she wouldn't have 1 at the end of her labor. It was common practice in those days to immediately remove the baby and tell mum the wee one was still born. My mum and dad never got to hold her, never mind see her. The closest my dad got was holding her tiny coffin on his knees on the way to the cemetery. Back then stillbirths weren't registered so the death was not recorded either. It's as if she never existed. But she did. Ever day of my mother's life she mourned her loss. Yes she was also told not to try for another child because the same could happen again, putting her and the foetus's life at risk. After 3 years my mother had to find out for herself was it something she done or just really bad luck. Thankfully it was the latter or I wouldn't be posting this.
ReplyDeleteHaving never been in the situation, but seeing the long term affects its had on my parents, I can only image how harrowing a time it was for you and my parents. Unfortunately it's not discussed much and no one seems to be able to find a reason why it happens. For that reason Thank you for highlighting it. These babies may be forgotten by society but not by their families. My sister never had a name or felt a cuddle but she was greatly loved and missed.
All I can say is hang on to the memories because as long as you have these Laora lives on.
Lindsay