baby blythe

d + r = baby b

What we didn’t tell anyone…the scary stuff

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To sound cliche, I remember it like it was yesterday.

It was a Monday–July 16–the day after my birthday. I was exactly 17 weeks pregnant and I was starting to show enough where people thought I was pregnant and not just a little pudgy.  It was a beautiful day and I was excited to celebrate my birthday with some colleagues that evening. After teaching my first day of summer school, I checked my phone and had a message from my OB office. I didn’t think much of it and assumed they wanted to reschedule an appointment or something.

I drove home with the windows down and once home, I changed into a maxi dress that would help show off my bump for when I met up with my friends that evening.  I casually called the OB office and was immediately put on the phone with a nurse.

“We need you to come into the office immediately. Your first trimester blood work came back and it tested positive for  Down Syndrome. Does 4 p.m. work?”  I dropped the phone and when I put it back up to my ear, I didn’t know what to say.

“Okay…so what does that mean exactly?”

“Dr. Short will explain everything when you come in. We have an opening at 4.”

“Okay. I’ll be there.”

Then the tears came.

I immediately called David and told him the news and he said he’d come home as soon as he could. About a half hour later he came home, and I contemplated cancelling my dinner plans with my friends. David said that we shouldn’t cancel and that we should just go to the appointment to see what Dr. Short had to say.

We got in the car and drove to the office. I couldn’t stop shaking, and I had no idea what emotions I was suppose to be feeling. It seemed like I was feeling everything from doubt to anger.

As soon as we got into the room, Dr. Short got straight to the point.

“Even though your nuchal fold tests came back looking normal, your blood work came back positive for Down Syndrome.”

I guess I should mention that we willingly got this first trimester testing done. During one of our first appointments, we were asked if we wanted to have the quad screening done which tested for things like Down Syndrome and neural tube defects and other chromosome abnormalities. We were told that most insurance companies covered the test, and we thought “Why not?”. Since my brother is mentally handicapped, we thought that we would like to know ahead of time if we were going to be parents of a mentally disabled baby.  We thought we would want the time to prepare–not only for ourselves, but also for our friends and family.

“Okay, so what does that mean?”

“Well, it’s pretty deceiving, because a positive test doesn’t mean your baby 100% has Down Syndrome. It just means your baby is more likely to be a Down Syndrome baby.”

“What does ‘more likely’ mean?”

“Well, according to your blood work, you are 8 times more likely to have a Down Syndrome baby than the average woman your age. Your chances came back as 1/150.”

“Okay. So we have a 1/150 chance of having a Down Syndrome baby?”

“Sort of. If we were to line up 150 women who had your same genetic make up, 1 of them would have a Down Syndrome baby.”

“So that seems like our chances are good that we won’t?”

“Well, maybe, but your risk is still considered to be quite high.”

“How often do these tests come back positive like this?”

“Very rarely. We might get 3 or 4 positive tests in a year.”

“So, what do we do?”

“Well, we have some options. The first thing you need to ask yourself is that if your baby DID have Down Syndrome if you’d want to continue on with the pregnancy.” My stomach immediately dropped and tears welled in my eyes. I looked over at David, even though I already knew his answer.

“Of course. We would never terminate.”

“Okay, then here are your options. One option is genetic counseling. A genetic counselor would go through your family histories extensively and then would determine a more accurate likelihood for you guys. This is pretty expensive, though, and doesn’t tell you anything for sure.”

“Okay, what other options are there?”

“You could get an amniocentesis which would give you exact results. You would know 100% if your baby had Downs or not, but the test is pretty invasive, and there are risks involved like miscarriage or pre-term labor.”

“That doesn’t sound like something we’d want to do.”

“Then your last and least reliable option would be to get a level II ultrasound. These ultrasounds are very extensive and detailed and take up to two hours to complete. We would search for traditional Down Syndrome markers such as heart defects and the amount of spacing between the eyes.”

“And why is this the least reliable option?”

“Well, 80% of Down Syndrome babies look ‘normal’ on these ultrasounds. The ultrasound could be free of any markers and your baby could end up having Downs.”

So we decided to go ahead and schedule the level II ultrasound, because while we thought we would want to know for sure, when it came down to it, the risks weren’t worth it. My level II ultrasound couldn’t be scheduled until the 22nd week of pregnancy, so they killed two birds with one stone so to speak and checked all the other things that they would normally check approximately mid-way through a pregnancy. It was at this ultrasound that we could have found out the sex of the baby. The ultrasound technician asked us two or three times if we wanted to know, and each time we said no. She even offered to put it in an envelope in case we changed our minds later, but we denied that as well. It was so exciting knowing that she knew whether we were having a boy or a girl. Anyway, she didn’t find any Down Syndrome markers during the ultrasound, but we knew that this was only somewhat reassuring.

And so, for 23 weeks of my pregnancy, we worried about whether or not we would have a baby with Down Syndrome. At first, I was terrified. David has a second cousin with Down Syndrome, so we knew it was “in the genes.” Of course we wouldn’t want our baby any less and we would love him/her just as much, but like all parents, we wanted what was best for our child. Since my brother is mentally handicapped, I know that mentally handicapped individuals are able to live long and fulfilling lives, but is his life different? Yes. Does he get excluded from a lot of things that “normal” people get to do? Yes.  We just wanted our son or daughter to have the best possible life he/she could.

Like I said, at first I was terrified, and I did a lot of reading about babies and children with Down Syndrome.  I also read a lot about what it was like to parent such a child. I found numerous stories of women who had the same exact odds as I did. Some of them ended up having Down Syndrome babies, and some of them didn’t. I also read plenty of stories of women who gave birth to Down Syndrome babies who had better chances and were less likely to have a baby with Down Syndrome than I had. However, with each day, I became less and less afraid of what it would be like if our baby was born with Down Syndrome.  Did it still cross my mind? Of course it did, but towards the end of my pregnancy, it was not something I feared or thought much about it (and this says a lot, because I’m a person who tends to over think, over worry, and over analyze everything.) I was at peace with it, and I knew that no matter what we would be happy and our baby would be happy.

On the day of Porter’s birth–when I knew for sure that it was the day I was going to meet my baby–I can honestly say that it was not something I was worried about. All I wanted was for our baby to be healthy and I wanted to meet him/her so badly.  It truly didn’t matter. Even when Porter was placed on my belly for the first time, I didn’t search his face for any Down Syndrome markers. (And if I’m honest, the first thing I looked at was his crotch anyway).

If we ever decide to have another baby and if we are able to get pregnant again, I’m not sure whether or not we would get the same first trimester testing completed. As of now, I don’t think we would.  For us, it caused a lot unnecessary worry and grief, and if the outcome wouldn’t change my mind about wanting the pregnancy, then I don’t see much of a reason to get the testing.

I was unsure for a long time if I was ever going to share this story. In fact, aside from our families, we didn’t tell very many people about it, even when it happened. However, an old friend of mine just recently told me that my post(s) about my miscarriage  have really helped her get through her own miscarriage. In fact, I’ve had many people–some of which I haven’t talked to in years–reach out to me to tell me about their own experiences or to tell me how much they appreciated my honesty in my posts. Some people even called me brave (me!) After this friend recently contacted me, I thought about sharing this story. I realized that it’s impossible to really know what people are going through or have been through, and I thought that maybe my story could help someone. That’s my hope anyway.

Stay tuned for a 5  month update (with pictures, I promise!)

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One thought on “What we didn’t tell anyone…the scary stuff

  1. I still remember the day that I received your phone call telling me this information. I will never forget the fear that ran through my body. But I also knew that you and David would be the best possible parents for a child who was handicapped. You are two of the most loving people I have ever met and I knew that no matter what happened you would be remarkable parents. No one wishes for their child to be born Down’s but I knew everything would be ok if he/she was and that he/she would be so lucky for you to his/her parents. You are so brave and I only grow prouder of you each and every day. Porter is so lucky that you are his mommy and he is going to grow up so happy! Love you guys so much!

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