Friday, October 24, 2008

Dept. of Mother Fetal Medicine.

We went to see the surgeon in Salt Lake today and the news was not what we wanted to hear. Acardiac twins (the medical term for what we have) happen about 1 in 35 000 pregnancies. So in itself, it's fairly rare. We knew there was a chance that our twins were sharing a sac, which makes everything more complicated. In a best case scenario, they would be in seperate sacs and the healthy twins sac wouldn't have to be punctured during surgery. We headed up to Salt Lake and went through a preliminary ultrasound with a tech, and then our new doctor, Dr. Ball came in. He spent a good hour with me on the table, checking things out on the ultrasound. Something puzzled him that he kept going over with the tech to figure out. Finally, he brought us back to the office. We found out that not only do our twins share a sac, they share an umbilical cord. Instead of two separate cords coming from the placenta to each baby, their cords are attached like a 'y' to each other. This made things harder, since Dr. Ball had never seen or heard of such a condition. For twins in separate sacs, the survival rate of the healthy twin is 90% after surgery. For twins sharing a sac, it drops to 30%. There isn't a survival rate for twins sharing a cord since it hasn't been seen.

So, here we are now. Dr. Ball is calling to all other 7 fetal centers in the country to see if they have ever experienced this. He is also sending me to Sick Kids in Canada to meet with the Canadian fetal surgeon and see what he thinks. We have three surgeries that we can go with, or we could do nothing at all. Best case scenario would be to be able to wait until the baby was old enough that if the surgery went wrong, we could deliver him. But there is a good chance that because the small twin is still developing, that he could get large enough to cause the healthy twin to go into heart failure slowly, or to have a heart attack suddenly. So we are just sitting on our hands to see if any of the other doctor's here in the U.S. have heard of this condition. If no one has, we'll just be in the dark and feeling along as we go. I can feel the healthy twin kicking up a storm right now, he's active and his heartbeat is good. But we don't know how long this will hold out. Unfortunately the smaller twin has no chance of survival. In order to save his brother, we have to cut off the blood supply he's getting from his brother. It's pretty discouraging news to hear we're losing one baby and might lose the healthy one too.

Above all though, thank you to everyone's kind words, emails, phone calls, dinners (Thanks Kara! it was delish) and prayers. We still need everything we can get. This baby will require a bonified miracle to get to us safely and I know that every little bit is helping us along.

Love, Jae

12 comments:

Kate said...

Oh, Jae! I can't even imagine! Our prayers are definitely with you and your doctors! Love you!!

imajacobs said...

Jae, I'm so sorry to hear the news. I'll be praying for you!

debora said...
This comment has been removed by the author.
Carly said...

Sorry, that was my deleted comment, I was logged in as my mom.

I'm so sorry Jae, I can't imagine. Prayers are with you. Let me know if there's anything I can do for you. I love you!!

Derek and Mary said...

Jae, we are praying for you guys! I hope that the doctors find out some more info for you. If there's anything I can do let me know!

Carolyn said...

Lots of prayers coming your way for you and those babies. We love you Jae! Hang in there.

Alisa said...

I know you can get through this, you are such s STRONG woman! I wish i lived closer so i could help in some way. Our family will be praying for yours.

Morgan and Derek said...

Oh Jae- I'm so sorry! I hope you get answers from Canada!

Hillary said...

My heart aches for you, Jae. I can't even imagine how hard this must be. You'll be in my thoughts and prayers for sure!!

~Pink~

Nathaly said...

Jae, I can't stop thinking about you and your babies. It's frustrating to not be able to help in any way. All I can offer is my prayers, and my hope that you experience a miracle at the end of all this. Hugs!

Anonymous said...

Oh, Jae - I am so sorry you have to go through this. I will put your family's names on the Tabernacle Choir prayer list. Miracles happen, sweetie -- keep believing.

Love from Kara's mom

J.T. and KristaLyn said...

Let us know if you need anything. We will continue to pray for you.

 
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