A Choice?

I will start this post off by offering one more statistic:


Over 90% of babies diagnosed prenatally with Down syndrome are terminated

Abortion?

I don’t know about you, but my stomach literally turned when I read that fact. It just didn’t seem like it could be real…but sadly it is. I am not here to argue the basic premise of pro-life or pro-choice, because I do believe there are situations where woman should be given full control over their own bodies. What does bother me is that 90% had already made the choice to continue the pregnancy.

I make this assumption because a CVS to confirm diagnosis of Down syndrome is performed around 11-13 weeks, or an amniocentesis is performed around 15-18 weeks. If those women didn’t want the baby I doubt they would even be that far along in the pregnancy, or for that matter even be undergoing the tests in the first place.

So why if they had previously chosen life, do they suddenly decide that life wasn’t worth a chance anymore? Of course I can’t answer this question myself, but I do have a theory. Their image of the perfect family, perfect children, and perfect world has been invaded. Thoughts of anguish and sorrow have surrounded them. Preconceptions of what a child with Down syndrome will be ambush their conscience and reason, and they forget that first and foremost she will still be just a child…their child.

Of course, I am not going to pretend it is the easiest path to walk down. There will be unique hardships to face, but there will also be unique joys to experience...ones that will make the hours spent in physical and occupational therapy worth every minute. In fact, these therapies sessions can be a fun and wonderful bonding experience with your child, and the pride felt when she reaches a goal will be indescribable. Or so I’ve been told (read... check out Noah's Dad).

Perfection?

The thing I ask then is, what guarantee did these women ever have to believe their child would be perfect? If a doctor could tell them in advance that their child will have colic, severe allergies, juvenille diabetes, a lisp, a birthmark covering a large portion of the face/body, or be anything other than society’s view of "perfect", would they terminate the pregnancy? This may seem like a silly analogy, but isn’t that pretty much what they are doing? The doctor says Down syndrome, but what they hear she will never be be "perfect". I think they are afraid she will look different and never go to prom, go to college, get married, or be view society’s view of successful.

Therein lays the problem. Who says she will never do these things? These are imaginary limits placed on the Down syndrome community that are only bolstered by society’s perpetuation of them. I may be new to this world, but I am determined that my daughter will not be held back because people tell her she can’t do something. I realize that some of those things may not be the norm, but nothing is impossible. In the words of Ralph Waldo Emerson,

“To laugh often and much;

To win the respect of intelligent people

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child,

a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived.

This is to have succeeded.”

[I do want to point out that I am ignoring some specific health concerns of babies with Down syndrome; for example, approximately 50% of babies will have some type of heart defect. However, according to my research and discussions with the doctor these conditions are either treatable by surgery, will just need to be monitored, or will resolve on their own. Again I ask though, what guarantee did these mothers have that any other child wouldn’t face some type of health issue? Also, there may be an argument of additional financial burden. However, I have found through my research that most states have sponsored early-intervention programs. In addition there are supplementary insurance options which are not always income based, or based on income levels well above what typical welfare-type programs are based on].

The Beginning

I would like to kick off this blog by throwing out a few random odds, taken from Funny2.Com: 

1 in 280,000 = Being struck by lightening
1 in 11,500 = Bowling a 300 game (not Wii bowling, of course)
1 in 5,000 = Getting a hole in one
1 in 19,556 = Incurring injury from fireworks

 Interestingly enough, I or someone close to me have known someone personally who have been that “1” above……clearly defying all odds. So here is one more statistic taken from another website, which is the inspiration for the title of this blog: 

1 in 1000 = A mother of 30 conceiving a child with Down syndrome

In retrospect it doesn’t seem so impossible that I am that “1” this time.

The fact is though that barely a week ago I never once thought that my baby would be born with an extra chromosome. I had been greatly anticipating my 12 week appointment, at which was scheduled an NT scan. I was excited at a chance of being able to actually see my little one on the sonogram and hear the heartbeat, as opposed to just a little blob which the technician told me was a baby. And that is exactly how the appointment started….

I saw my little baby dancing around on the screen, waving, sucking her little thumb. I heard her heart beating at a strong 168 beats per minutes. Lying back with an amazing feeling of love, the technician started into the the true purpose of why I was there. Of course I had no worries. She wiggled the wand across my belly and was clicking away on the screen. I watched her move a cursor, measuring the fluid behind the baby’s neck. I watched her face briefly show a moment of concern. She wiggled, clicked, measured again. Then the words came, and I immediately knew that something wasn’t right. She excused herself from the room and told me she was going to get the doctor.

From that point forward, everything was surreal. The doctor also wiggled, clicked and measured….. He calmly explained to me what they were seeing. The fluid behind the baby’s neck was measuring at 3.7mm. According to the doctor, at my baby’s gestational age the maximum they would prefer to see is 3.00mm. Ideally, however, it would be much less. The amount of fluid immediately raised the risk of a chromosomal disorder to high.

The doctor also was detecting a hygroma, a fluid-filled cyst, on the back of the baby’s head. He told me approximately 60% of the time these are caused by a chromosomal abnormality. Between these two things he saw on the sonogram, the doctor was quite certain my baby had a genetic syndrome. He offered a test that could tell me with over 99% accuracy. I did not hesitate to say yes. I will not go into the details of the what the CVS involved, but I will say it was a terrifying. Especially because I was alone, and probably more so because deep down I already knew what the results would be.

Two days later, I received a phone call from the genetic counselor. She confirmed my baby has Down syndrome. I let go of the small sliver of hope I was holding onto, and so begins this journey. It is one I am not quite sure I am prepared for, but one I am willing to embark on.