This may well be a controversial post. It's ok if you disagree with me. It's ok if your reaction would have differed from mine. I debated about whether or not to discuss this on my blog, but in the end I decided it might help someone going through something similar. I strive for being open and honest on my blog, and this is my truth.
On Tuesday, April 2nd my family of three piled in the car, full of excitement and anticipation. We were on our way to have an elective ultrasound to find out the sex of Baby House #2. Cooper was full of pride and wore blue in honor of the occasion; he was positive he was going to have a baby brother. We would find out soon!
There is nothing quite like seeing your child for the first time. I mean, I knew I was pregnant, but this made it real. Hearing the heartbeat, seeing the child move, hearing the sex... it's all so incredible and precious. Jason and I left that appointment on a high - a high that lasted approximately one week.
The following Tuesday I received a phone call from my doctor's office - my AFP testing had come back showing markers for Down's Syndrome.
AFP testing is typcially done around 16 weeks. It's also known as the quad screening. The mother's blood is screened for alpha-fetoprotein, which can often be linked to spina bifida, anencephaly, and Trisomy 18 or 21. AFP takes into account several factors: race, age, weight of the mother and fetal age of the baby. These factors are translated into a number; for example a 1 in ___ chance of your child having Down's Syndrome.
The nurse was very short (but polite) with me. She was sure it was nothing, but she wanted me to come back in and do a more accurate, in-depth test to investigate this further. I was honestly in shock; I agree to come in immediately and headed there as soon as I could get office coverage.
I fell apart when I got into the car. I called Jason, sobbing. I was absolutely terrified. Jason, of course, could do absolutely nothing for me. He works a hour away and he just did his best to calm me down and assure me it would all be ok. I called my mom next - and it was the same. She just tried to calm me down and told me it would all work out.
At my doctor's office, I submitted blood for the MaterniT21 PLUS test. This is a newer test on the market and it is being advertised as 99% accurate and a less invasive option to amnios. The test pulls DNA from the maternal sample and determines Trisomy 21, 18, and 13. This test would definitely tell me whether the baby had DS or any other chromosomal disorder.
I cried the entire time I was at the doctor's office. My doctor was out on a delivery and could not see me, but I did speak with her nurse. She gave me all the reassurances in the world, but honestly? All I could hear was that there was something wrong with my baby.
My doctor did call me later - and she went further and told me that according to the AFP test, I had a 1 in 146 chance of having a child with DS. The baseline for a woman my age is 1 in 350. I was told it could take up to 2 weeks to receive results, and if positive I would be referred to a high risk OB for a level 2 ultrasound and an amnio.
So I waited. I prayed. I worried. I cried. I spent time on my knees in prayer, and finally, I found peace in God's perfect plan for both me and my little one.
I know there are many who would have handled it differently. Some of you probably would have shrugged it off and decided that you wouldn't worry until you got your second round of test results back. Some of you may have decided to decline the AFP test entirely. Some of you might have been completely at peace with the thought of having a child with special needs.
Well, that just wasn't me. Honestly? I probably would have been one of the above if I wasn't in the field I am in.
For those of you just now reading, I am a social worker. I work for a foster care agency that provides housing to children and adults with disability. My entire caseload is diagnsosed with Mental Retardation. I have several healthy, high functioning individuals and I also have several individuals who are complete and total care. I know individuals who cannot walk, talk, or communicate in any way. Imagine being wheelchair and bed bound. What if you had to be fed by a g-tube? What if the only part of your body you could move was your head? What if you were institutionalized as a child because your care was too much for your parents to handle? What if the only family you knew was the nurses and staff who were paid to care for you?
These were the thoughts that kept going through my head. I had someone tell me "well, even if the baby does have Down's, maybe they will be very high functioning and will be able to lead a normal life!" Well, yes, maybe. But DS - as well as other genetic and other
chromosomal disorders - is often teamed with other health problems, some
of which are life threatening. No mother ever wants to hear her child may suffer in any way, shape, or form. No mother every wants to think of their child's health being threatened.
Of course that wasn't what I wanted for my child. Did being scared mean I wanted to abort my baby? No, absolutely not. Did it mean I wouldn't love my child? NO! I would love my baby no matter what. I wasn't upset because it necessarily was... I was upset because I didn't know how bad it could possibly be.
Jason spent a lot of time on various baby boards, reading about other people's experiences with this test. He read posts from lot of people who said "it didn't matter to me because I'd love my baby no matter what" or "I declined further testing because I love my baby, DS or no." A lot of people who get similar results decline an amnio, stating that is it risky and unnecessary. I would have absolutely have an amnio, simply because I'm the type of person who wants to prepare and be informed.
A lot of people told me not to worry. They told me false positives were common and mine would probably be a false positive as well. My mom would forward me endless posts from Baby Center talking about "my test was a false positive!" She wanted me to talk to a friend of a friend who had a similar experience that turned out to be a false positive. Jason bombarded me with statistics and studies.
None of that helped me.
I didn't want to hear that it could be a false positive. Sure, I knew that, and I absolutely 100% prayed it would be so. But you know what? False positives are just one flip of the coin. For every false positive there is a true positive. And regardless of what someone else's experience was - I could be the true positive. I am very much a black and white person. I deal best with bottom lines. I wanted to come to peace with the possibility that there could be something wrong, because I needed to know that no matter what happened we would all be ok. Most of all, I wanted to feel what I was feeling, without having someone else tell me I was wrong.
God really worked on me in that week and a half. I finally realized that no matter the result, I would be ok. My baby would be ok. Even if he/she was total care... it was part of God's plan, and God does not give us more than we can handle. God is good, all the time. Even in the darkest times, He is there to be our strength and shield.
One thing I've realized in the past few weeks is that our health is a precious gift. We are not promised tomorrow. As mothers, we are not promised healthy babies. Even if this test came back negative, something else could be wrong. My baby could have a heart defect... leukemia.... SIDS.... or something else. You just never know. Whether we have warning or it happens suddenly, the end result is the same. You endure. You pray. And you trust in God.
Jason sent me a bible verse the night before we got the call with the test results. 1 Samuel 1:27 "For this child I have prayed, and the Lord granted what I asked of Him." Thank you God! You granted my prayer, and you made me no promises except that this baby was part of your plan. You did not promise me a baby with perfect health... you promised me a child. And that you have granted.
I'm happy to report that my second test, the MaterniT21 test, came back showing no signs of Down's. That does not mean that something else could be wrong; it just means that my baby does not have Trisomy 21, 13, or 18. I had an ultrasound last week to look for other abnormalities, but unfortunately my doctor got called out to a delivery and I wasn't able to go over the results with her. I have an appointment to do that on Thursday.
No matter what, I am at peace. I am grateful for God's provision and His plan. He is good, all the time.