Tuesday, October 23, 2007

Last post from myspace

I don't like to get judgmental on people, and I don't like wagging my finger either. Often when it comes to certain Christian issues, the Christians get carried away and judge - or at least sound like they're judging.

I normally wouldn't write something like this, but considering the fact that I chose not to abort when "politically correct", I believe I have a right and a responsibility to say something.

My son has a neural tube defect. When a child is conceived, the first thing to be visible (ie. look like something besides bubbles) is a brain stem and a neural tube, which grow into brain and spinal cord. When a neural tube fails to completely close, a neural tube defect is present.

Most often it results in anencephaly, where above the ears, there is nothing - no brain, no skull, and no possibility of life. Children born with anencephaly die within 24 hours normally. They have no brain function to continue even basic organ functions.

The second most common is spina bifida, which you may have heard of. This is where the spinal cord grows out of the spinal tube into a sack on the back. Depending on the severity of the sack and the defect, some children suffering from spina bifida experience lack of feeling in the lower body, inability to control waste systems, joint abnormalities, and back deformities. Beyond these problems, they can live a normal life though, assuming they do not suffer from anything else (often NTD are only one of several problems).

The least common form of neural tube defect is called encephalocele (Pronounced by the USA as en-sef-a-low-seal, NZ says en-kef-a-low-seal). This is where the skull does not seal completely in the first 25 days of development and a sack is formed where cerebrospinal fluid (spinal cord and brain fliud) fill the sack. Sometimes the sack only contains this fluid, other times brain begins to grow through the hole in the skull. Often these sacks grow through the face - causing little bubble, tumor-like sacks and they remain fairly small. Joshua's is an occiputal encephalocele - about where a yalmula (Jewish cap) would be.

In Joshua's case his cerebrum, the main portion of his brain (the top half controlling language, memory, and movement) has grown into that sack. His cerebellum (controlling balance, movement, and coordination) and brain stem (controlling body functions necessary to stay alive) are still inside his skull. Because the skull has not had the brain to "hold form" it is slightly malformed as well (ie. not perfectly round). Often NTD come with other issues such as Trisomy 18 Syndrome, Down's Syndrome, Meckel-Gruber Syndrome, von Voss Syndrome, Chemke Syndrome, Roberts Syndrome, Knobloch Syndrome, Dandy-Walker malformation, spina bifida, Arnold-Chiari II malformation, heart defects, and kidney problems.

Joshua has had an amniocentesis done (a test of his amniotic fluid) and he does not show any chromosomal abnormalities, and his physical body does not show any of the abnormalities often seen in some of the above named syndromes. His heart is also fine. In that, we are blessed, he will most likely be strong enough to withstand brain surgery, as there are not another medical problems to consider.

However, even with that bit of good news - his brain is still growing outside of his head, and he still has a hole in his skull, and he still has a possibility of developing hydrocephalus (where cerebrospinal fluid collects on the brain, causing pressure and requiring a surgerical shunt).

I joined a Mommy's blog and chatroom when Oceana was 6 months old, and continued on when I found out I was pregnant with Joshua. It's been a fantastic resource for me, but I began to see comments like this:

"I gave birth to our baby boy, Oliver (name changed), at 18 weeks last November, He had severe abnormalities. He would not have made it to term and we chose to terminate by induction. It was the hardest thing I think I will ever have to do."

"We suffer greatly so our babies do not have to."

"Today is 2 weeks since the D&E (Dilation and extraction - abortion) - I am grieving for him at every moment, wishing I had my baby to kick me and grow my belly. I hope he understands why we decided what we did. I love him so and miss him every waking moment."

"Due to the diagnosis and the tremendous amount of pain our little girl must be in, DH and I have made one of the most painful descisions a parent can make and have decided to induce this week. Even worse we found out our insurance will not cover the cost of an induction, so our choices were to go to a tradition termination clinic or pay more out of pocket and get the procedure at the hospital. Needless to say I might kill someone if I had to sit in an abortion clinic, so we have chosen with the tremendous financial help from family to proceed with teh induction at the hospital. Where in the end, we will at least be able to hold our precious daughter and say our goodbyes. And will receive her remains in the end so she can be taken care of properly."

But here's my issue with these statements. It's call "termination for medical reasons" or "early induction" - but never abortion. Okay, let's be technically correct - if the child were "unwanted" it would be considered an abortion, no matter how far along the pregnancy was. If it was a "wanted" child then it's considered a termination or early induction. Same procedure...differing choice of words.

Growing up I was around a lot of pro-life propoganda. My grandfather, Bob Mears, was one of those people who chained himself to the abortion clinic doors to prevent women from entering the building - trying to save just a few lives. He picketed routinely outside clinics, got arrested several times, and spoke out so freely and loudly about his position against abortion that his church actually asked him to leave the eldership because he wouldn't "quiet down". My grandfather was an idealist - in that he had his beliefs and he wasn't going to go quietly and keep them to himself. He had an idea of how life should be (ie. children should never be aborted.) and he stuck to it.

He's not judgmental - his mother had an abortion. He loved his mom so much, and when he discovered she'd had an abortion he helped her to walk through forgiving herself and prayed for peace in her heart. (She had nightmares about it for 70 years).

My parents were in the same boat - pro-life. They took all four of us kids picketing when we were little (2-8 years old). I stood outside clinics before I was ten and prayed for women entering the buildings. I believed strongly that every fetus is a life and it should not be cut short for convenience.

But I never imagined that I would one day face the possibility of abortion, termination, inducing early, myself. The day we found out about our son's defect, we thought it was anencephaly - no possibility of life. I knew a woman who had an anencephalic daughter, and she carried until 7 months - knowing her daughter would die at birth. Leah lived 6 minutes. I knew the outcome of anencephaly. I was heartbroken. I never realized how much I wanted this 2nd baby until the thought of not having him was there.

In those first few days I began to think, "What difference would it make if he was induced now - aborted or born at full term and died. Either way he'll never grow up!" But the Lord spoke to me very clearly and said something to the effect of, "I have entrusted you with children, and it is your job to take care of them until I take them from you. You'll take care of Oceana and do the best for her until she's gone, and you have to do the same thing for Joshua now."

I realized it was lies from the pit of hell that were telling me it was okay to abort Joshua. Later we learned that it was an encephalocele and that he had some possibility of life. But even now, we don't know how he will do - we don't know if he will ever talk, walk, see, or do anything.
I've been asked - straight up - "Have you considered a termination?" by my doctor. That's a place I never want to be again.

I've been told by my mother, "Your grandfather would be proud of you." And that's nice to hear - but more importantly - I want God to be proud of me. I don't want to cute Joshua's life short, just because he might have to endure pain, or because it will mean tons of surgery, or he might never have a quality of life that others may have. He may never be a bouncing, happy child like Oceana.

But it's not my right to choose when he goes to be with the Father - that's his Father's choice.

At the same time, I cannot and will not judge the women who have chosen to terminate because of medical reasons. If they don't know the Lord, they're not going to know His heart on the life of their child. But believe you me - I believe every aborted child is in the arms of the Father - a Father who holds them, loves them, and wipes every tear from their eyes. They have no more sadness, no more pain, and they have a perfect destiny in the throne rooms of heaven.

I will cherish the time I have with my son - that includes this time that I get to carry him.

I do not care if you agree with me or disagree with me about termination medical defected children. Unless you've faced the decision, you do not know the pain and uncertainty - so don't get up on a high horse and tell me what I should or shouldn't think about. And for goodness sake - don't ever ask anyone why they didn't terminate if you meet someone in my position.

Thank you everyone for your prayers, we feel them, and we know they make the difference. It's a miracle in itself that he does not have heart defects or a chromosomal abnormality. I choose to believe God brought those parts of his body into alignment with His will in part because of the prayers of the saints. Thank you again. We love you and miss you all.

BTW - the picture is at 29 weeks.


  1. i can't tell you how proud of you i am Susie Sams.

  2. hi i commented you earlier today, but i just read this one too :)

    i was a 19 yr old nyc college student when i got pregnant, and i just remembering being so suprised and enlightened by this gift, this pregnancy, that i would've done anything for my child. it was difficult for my family to understand or support - especially because i have no devotion to a god or religion- it was as though they thought i should just have an abortion, as though since i dont believe in god i'm morally unaccountable... I completely understand the position you've taken, and, to me, it has nothing to do with christianity or no-christianity. You've given someone life, with undoubted suffering on your part, and that is natural and wonderful and beautiful.

    love and peace,