Tuesday, December 21, 2010

The Sequential Screening: Why I Changed My Mind

All the pregos know that between 11 and 14 weeks, the OB suggests (usually somewhat firmly) that you receive the "Sequential Screening". In a nutshell, Sequential Screening is a way to estimate the chance that a baby will be born with Down syndrome, trisomy 18, or an open neural tube defect such as spina bifida. During my first pregnancy I had a very firm response back to the doctors when they suggested it: No Way. My husband and I had already discussed it and decided that it really didn't matter - we loved our baby no matter what. I wasn't going to get an abortion, so what did it matter what the baby did or didn't have? At the time, I felt the Dr.'s assumed that if there was something "wrong", I would have opted for an abortion. But I really can't blame them for making that assumption based on the track record of so many mamas - studies show close to 90% of babies found to have Down syndrome are aborted. Shocking, I know. I'm not going to judge the decisions of those mothers - I can only imagine it was the hardest thing they've ever had to go though. But I know that abortion isn't an option for me. So, I firmly denied having any genetic testing done on Miss Paige while she was still in my belly.

Then, at about 6 months, I was given some potentially devastating news. Here is the post I wrote documenting that event: http://sweetleighmama.blogspot.com/2009/08/last-few-days.html

At the time, I wasn't able to write specifically about what the doctor had told me because it was too raw, but I will now... After all, the experience is forever burned into my memory.

During the ultrasound, the tech saw a suspicious raised area on the bottom of Paige's spine. She kept zooming in and taking pictures of it. I immediately knew something wasn't right. When I asked her what was wrong, she said, "This doesn't look good. I need to go show the doctor immediately." And she ran out the door, leaving me on the ultrasound table, all alone, wondering what had just happened. I couldn't breathe. It felt like hours passed before the tech returned with the doctor. They both stared at the screen, again zooming in on Paige's tiny little spine and the "bump". The tech kept asking the doctor, "Do you see it? Do you see it?" And the Doctor would squint and say, "Not really, but it definitely looked like something on the picture you printed out." This back and forth went on for about 15 minutes as the tech tried to convince the doctor of what she had "seen." During this whole time, no one was telling me anything. Finally I asked - What is going on? What does the bump on her spine mean?! The Doctor looked at me nonchalantly and replied, "Well, it could be Down syndrome, but most likely if it is what we think it is, it's an open neural tube defect... spina bifida." At that point my mind went blank. Absolutely blank. Then she said, "But you got the Sequential Screening done, right? What were the results of that?" I informed her I hadn't gotten the screening done... but said I would get it done now to know for sure. She told me it was "too late" - that the only way to tell now was through ultrasound screenings or an amniocentesis. She told me to come back in two weeks, where they would do another ultrasound and determine if an amnio was necessary.

TWO WEEKS?! You want me to sit on my big butt for TWO WEEKS and wonder if my baby will never walk?! I would have given anything in that moment to have the results of the Sequential Screening. Not because I would have aborted her or wouldn't want a baby with a major disability such as spina bifida, but because I truly feel NOT knowing is worse than having all the information up front. I don't deal well with surprises or unpredictable situations. I like to know as much information as possible right off the bat - so I can process it and move forward with an appropriate plan. If Paige really did have spina bifida, I would have liked to have spent the last 4 months reading, preparing and educating myself on the condition so I could be the best mama to her that I could be. I felt unprepared and completely caught off guard.

And while additional ultrasounds proved there was absolutely nothing wrong with the baby girl growing inside my belly, I vowed to not ever be caught off guard again. So this time around, I opted to get the Sequential Screening done. So far I've gone through the first stage of it, and all looks good - no signs of Down syndrome, trisomy 18 or an open neural tube defect (spina bifida). And I'm confident that even if the results had come back to show the baby may have one of the above, we would have been ok. Would it have been devastating? Of course! The hardest part for me during the scare with Paige was wondering what her life was going to be like. I would cry at the thought of her having any difficulties or obstacles to overcome. Every parent wants their child to experience nothing but joy. But I know a number of strong mamas who have the most wonderful, amazing children with Down syndrome and other conditions.. and I knew we would be ok, too.

So... when people ask me my thoughts on the Sequential Screening, I'm always honest with them - I think it is a valuable source of information. Some people may not want the information. But I know now, that when you can't touch or hold or see or comfort the precious miracle growing inside your belly, it's best to know what you CAN do to prepare for the day when your baby is snuggled tight in your arms.