Thursday, February 2, 2012

Choroid plexus cysts

Two weeks ago we learned we were expecting a daughter in June. We had hoped the earlier glimpse of her at 14 weeks was correct & it turns out it was! There is definitely a beautiful little baby girl growing inside me.



But this wonderful news was clouded a bit by the discovery of two cysts growing in her brain. They are called choroid plexus cysts, typically harmless growths that eventually go away by week 28 of the pregnancy. The only reason for concern is that these cysts can sometimes be linked to a rare & serious genetic disorder called trisomy 18. Much like trisomy 21, or Downs Syndrome, trisomy 18 is when 3 chromosomes appear for #18 rather than the typical pair you would normally find. However, trisomy 18 is more severe than DS and often results in the loss of the pregnancy or stillbirth. It stunts growth, movement & causes a deformed heart.

Since I am considered "advanced maternal age", I'll be 35 when she's born, I was in the Maternal Fetal Medicine office at IU North. The staff is fantastic & were very nice during my previous scan, so when given the choice, I decided to go back to their office. This also gave us the advantage of having a high-risk obstetrician come into the u/s room & look at the baby herself.

The doctor assured us that we had "no reason to worry". But you do worry. You worry that your child might face something that you can't fix for her. Something that you didn't cause, but feel guilty over nonetheless. You start to second guess everything you put in your mouth that might affect the baby. I began to question my vitamins, my diet, the zofran I've been taking to help with vomiting & nausea... all of it. But the truth is, for a lot of babies this is a normal part of development. And thanks (or no thanks) to advanced technology we can now see these "parts" whether they be good or bad, reassuring or scary as hell.

On the way home from the ultrasound that day I convinced myself that everything was fine. Our baby did not have trisomy 18 and we didn't need to worry anyone around us either. I told Andy over & over that this is just the first of many heart attacks his daughter will give him. And of course when we got home I sat down in front of the computer & googled the ever living daylights out of these cysts to prove to myself that I was right. And you know, for once looking something medical up online actually calmed my fears. I read story after story affirming what Dr. Anita had told us. Friends told me their stories of the same ordeal, all with happy endings. We really were right in believing this would all be okay.

And for the next two weeks I was fine. Absolutely fine.

Every kick reassured me. Every hiccup proved to me this was a normal, healthy child.

But on Tuesday, the day before my regular check up with my obstetrician, I read a story online about Rick Santorum's daughter who has trisomy 18. I had thoroughly researched choroid plexus cysts, but I had never googled trisomy 18. Seeing her picture & hearing that she was 3 yrs old intrigued me. (my limited knowledge of the disability was that babies who did survive the pregnancy rarely lived more than a few weeks.) So I googled it. And all of the fear about our baby, all of the worry, all of the "what-ifs" came surging back to the surface.

I didn't sleep well that night & Wednesday morning I was a ball of nerves. I was worried my doctor would have a different opinion than the specialist. I was worried she'd call for more tests, something she only does when she is concerned. (she's not much of an alarmist) I took the boys to school & was anxious to get to my appointment.

It's really by chance that I decided to pop back into the gym for morning announcements after taking Charlie downstairs to the preschool. It happened to be the morning the whole school prayed the Rosary as part of Catholic Schools Week. If you've every prayed the Rosary, you know how often you say the Hail Mary. As I stood in the gym & repeated this prayer, through each decade of the Rosary, I found myself focusing on the phrase "and the fruit of thy womb Jesus". It hits me that we're praying to a mother. With each Hail Mary I began praying for the fruit of my womb, focusing on the cysts in her brain & visualizing them shrinking. I know medically that these cysts will very likely go away. But I also believe that prayer, deep thoughtful whole-hearted prayer, can help too. I left school that day a little teary eyed, feeling that God had put me in the right place at the right time... to pray for this very big thing I'm asking from him. To protect our little girl. To deliver her to us safely & to make those cysts go away.

My appointment an hour later ended up going very well. My doctor told me how unlikely it is that our daughter has trisomy 18. She talked about what other big issues there would have been during the ultrasound & how if our child faced this disorder, the cysts would actually be the most harmless of those signs. My doctor is also my neighbor, so I benefit from knowing her outside the office, making it easy to trust in her.

As luck would have it, I talked to my friend Lis later that afternoon. She was the person who put this whole ordeal into terms I can absolutely relate to. Lis reminded me that a windy day doesn't mean you're preparing for a hurricane. Most of the time it's just wind. She's absolutely right, making me thankful there isn't a huge storm on the horizon.

I think after these past few weeks I'll give my Google search bar a rest.

4 comments:

Bev Johnston said...

I can only imagine how scary this is! Lis is right though! Sometimes advanced technology is a mixed blessing. Praying baby girl is perfectly healthy!!!

Keeley said...

Aly- John and I went through the exact same thing with Carson. She had the cysts, and the threat of all those disorders. Scared the living daylights out of John and I but turns out she was perfectly normal. I hate that you and Andy have to go through this. Feel free to call or email me if you need to talk. I know first hand how aweful it makes the rest of the pregnancy.
I am sure your little girl will be perfect. Good luck to you and Andy. Sometimes all this technology is a little to much.

Keeley

Jill said...

My mind has been boggled by how calmly and seemingly without worry you have been through this time. I hoped that your bravery was not just a front, but that somehow you had found a way to not worry over this one.

I think you have every right to be anxious but it sure sounds like your doctors know what is what. And though I am not much into prayer, I have been rolling my new niece around in my thoughts quite a bit lately and hoping for the absolute best for her and you.

I love her already!

Babs said...

I wish you didn't have this knowledge. I worried about this kind of challenge with each pregnancy, but I carried my babies too early for the kind of technology that's available to you today. I don't know what else to say, except that I love you and want the best for all of you, especially this new tiny girl who's busy growing inside you. I'm here for you if there's anything I can do.