Before I start part 3 of the story, I just want to say how truly amazed I am at all of the overwhelming support given to us by our friends, family and complete strangers during this time. I just returned from a conference where I had no access to my blog (ack!) to see 21 comments to my last post… 19 from people I had never met before! I read them this morning with tears streaming down my face. I am overcome with emotions at the beautiful words of encouragement and complete kindness of strangers. Thank you, thank you, thank you. We have found solace knowing that we are not in this alone.
---------------------------------------------------
Our heads were spinning as we left the hospital. I called my work to let them know that I wasn’t going to be able to make it back that afternoon. I wasn’t ready to face all of the smiling, inquisitive folks who just wanted to know the sexes of the two little ones growing inside of me. I wasn’t prepared to answer. In fact, the last news given to us completely trumped the fact that we were having two little girls. We didn’t send out a massive text… we didn’t post updates to facebook… we didn’t call all of our friends and family to tell them the good news… we just weren’t up for any chatting at that point.
After a very silent, uncomfortable lunch at our favorite diner, we went home to process the information. We went back and forth about our options and our feelings on having a child with Down syndrome. I think we talked through all 5 stages of grief that night. At one point, I went into the shower to find some solitude and allow myself to experience every emotion I needed to. I cried to God and prayed for him to give me two healthy little girls without Down syndrome. Then I cursed myself for being so selfish and thinking that way. I was disappointed in myself and ashamed that I didn’t want a child with any disabilities. Because I work with adults with disabilities, I thought “I outta know better” and should completely embrace the news. I thought “I know that a diagnosis of Down syndrome is not a death sentence and that plenty of people live full and happy lives with it. I know that people with Down syndrome are beautiful, loving people who enrich the lives of others. And I know that the relationship that Damon and I have is more solid than stone and that we would be incredible parents with lots of love to give to a special needs child.”
Then the pendulum swung the other way and I again begged God not to have a child with Down syndrome. It took me sleeping on it and a lot of praying that night to calm down and accept the possibility. I also started to feel better about my odds and decided to focus on the positive.
We’ve decided not to do any genetic testing. To us, it doesn’t matter if one of our babies has any birth defects. We would still have her, raise her and love her unconditionally.
We did, however, decide to have my blood tested to get a more accurate “risk” result. The chemical levels in my blood actually decreased the risk for the babies. Baby B now has a 1 in 620 chance and Baby A’s risk has gone down to 1 in 80.
Worry, fear and doubt still creep into my head every once in awhile, but I try to push them out and focus on the positive. Worrying about it won’t change anything, fear won’t make things better and doubt won’t allow me to be excited that I am having two precious little girls. So when I start feeling down, I just go out and buy them something adorable. There’s a lot to be said for retail therapy.
Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
Saturday, August 15, 2009
Saturday, August 8, 2009
20-Week Dr Visit: Part 2, The Bad News
(suggestion: read Part 1, the blog below, first)
I unrolled the massive pile of pictures and spread them across Damon and myself so we could both view. We stared in awe at our little girls. Some of the pictures were so incredibly clear that we could make out the little details in their faces! I looked at Damon and he was white. “I feel like I’m going to throw up.” He said. “I know.” I agreed, trying my hardest to remain calm.
Dr. Chang entered the room followed by Julie and introduced himself to us. His tone was very serious and he didn’t waste any time. The ultrasounds revealed an echogenic focus (a white spot) on each of the babies’ hearts. While the echogenic focus alone did not indicate a heart condition, it was a “marker” for Down syndrome. My jaw dropped. I looked at Damon who was staring intently at the floor.
Trying not to jump to conclusions, I asked him what that meant. He told us that there were medical studies that suggested that there was a correlation between finding the echogenic focus on an ultrasound and the baby having a genetic disorder. Once they saw the white spots, they then looked for other markers on the babies, Baby B had no other markers but with the echogenic focus, her chance of having Down syndrome went from 1/760 (based on my age) to 1/420.
Okay I can live with that, I thought… but what about our other little girl. “And Baby A?” we asked…
Baby A had two other markers he told us. Her head to femur (upper leg bone) ratio as well as head to humerus (upper arm bone) was low. With the echogenic focus and these two other markers, her chance of having Down syndrome went up to 1/55.
I stared back at him in shock. Are you serious? We just had this incredible experience of watching our babies interact with one another in the womb, we just learned that we are having two little beautiful girls and you are going to drop this on us? Totally not fair. I don't even want to hear it!
I pushed the emotional part of me down as far as I could which only left room for the logical to emerge. I bombarded him with questions, trying to make sense of what he was telling us. The only thing was that I had a hard time of listening to a word he was saying. I tried my hardest, but my mind was racing and the truth is, I really didn’t want to hear what he was saying.
The next thing I realized, we had been swept into another office and were now sitting across from a Genetic Counselor listening to her spout out facts, medical terminology and numbers. We kept asking questions, trying to make sense of it all.
What does this mean? Does Baby A have Down syndrome? There's a 1 in 55 chance she does. Is that high? It's a 1 in 55 chance. Well, that's like 2% right? Yes. Could it be a false positive? It's a 1 in 55 chance, which is not 100 percent positive.
We had previously declined to take the 18 week blood test (that tested for Downs, Spinal Bifida and a few other genetic disorders) for fear of this very thing. If it was only going to tell us what our babies' risks were and not give us a concrete answer, we didn't want to know. Why put yourself through that worry during your pregnancy? But here we were anyway. Worrying away.
The only way to know for sure, she told us, is to have an amniocentesis (a process where they draw fluid from the amnitic sac and test the babies' DNA for genetic abnormalities). This test would give us a concrete answer, but guess what? There was a 1 in 200 (or so) risk of miscarriage following the test. More numbers...
This is not the way this appointment was supposed to go! This is not the way I had planned my pregnancy to be! We wanted as little medical involvement as possible and now it seemed like we couldn't get away from it!
She was completely factual and rational and I resented her for it. I needed someone to hold me and tell me it was going to be alright. I needed to get out of that office.
Damon and I quickly wrapped up the visit saying we needed to discuss our options and would call her to let her know what we decided.
I unrolled the massive pile of pictures and spread them across Damon and myself so we could both view. We stared in awe at our little girls. Some of the pictures were so incredibly clear that we could make out the little details in their faces! I looked at Damon and he was white. “I feel like I’m going to throw up.” He said. “I know.” I agreed, trying my hardest to remain calm.
Dr. Chang entered the room followed by Julie and introduced himself to us. His tone was very serious and he didn’t waste any time. The ultrasounds revealed an echogenic focus (a white spot) on each of the babies’ hearts. While the echogenic focus alone did not indicate a heart condition, it was a “marker” for Down syndrome. My jaw dropped. I looked at Damon who was staring intently at the floor.
Trying not to jump to conclusions, I asked him what that meant. He told us that there were medical studies that suggested that there was a correlation between finding the echogenic focus on an ultrasound and the baby having a genetic disorder. Once they saw the white spots, they then looked for other markers on the babies, Baby B had no other markers but with the echogenic focus, her chance of having Down syndrome went from 1/760 (based on my age) to 1/420.
Okay I can live with that, I thought… but what about our other little girl. “And Baby A?” we asked…
Baby A had two other markers he told us. Her head to femur (upper leg bone) ratio as well as head to humerus (upper arm bone) was low. With the echogenic focus and these two other markers, her chance of having Down syndrome went up to 1/55.
I stared back at him in shock. Are you serious? We just had this incredible experience of watching our babies interact with one another in the womb, we just learned that we are having two little beautiful girls and you are going to drop this on us? Totally not fair. I don't even want to hear it!
I pushed the emotional part of me down as far as I could which only left room for the logical to emerge. I bombarded him with questions, trying to make sense of what he was telling us. The only thing was that I had a hard time of listening to a word he was saying. I tried my hardest, but my mind was racing and the truth is, I really didn’t want to hear what he was saying.
The next thing I realized, we had been swept into another office and were now sitting across from a Genetic Counselor listening to her spout out facts, medical terminology and numbers. We kept asking questions, trying to make sense of it all.
What does this mean? Does Baby A have Down syndrome? There's a 1 in 55 chance she does. Is that high? It's a 1 in 55 chance. Well, that's like 2% right? Yes. Could it be a false positive? It's a 1 in 55 chance, which is not 100 percent positive.
We had previously declined to take the 18 week blood test (that tested for Downs, Spinal Bifida and a few other genetic disorders) for fear of this very thing. If it was only going to tell us what our babies' risks were and not give us a concrete answer, we didn't want to know. Why put yourself through that worry during your pregnancy? But here we were anyway. Worrying away.
The only way to know for sure, she told us, is to have an amniocentesis (a process where they draw fluid from the amnitic sac and test the babies' DNA for genetic abnormalities). This test would give us a concrete answer, but guess what? There was a 1 in 200 (or so) risk of miscarriage following the test. More numbers...
This is not the way this appointment was supposed to go! This is not the way I had planned my pregnancy to be! We wanted as little medical involvement as possible and now it seemed like we couldn't get away from it!
She was completely factual and rational and I resented her for it. I needed someone to hold me and tell me it was going to be alright. I needed to get out of that office.
Damon and I quickly wrapped up the visit saying we needed to discuss our options and would call her to let her know what we decided.
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