Wow hon. Just wanted to pop on here and let you know that my prayers are with you and your little boy. You seem to have faith in God. They're only doctors. I had to learn that during my pregnancy with Nate. Start telling your little boy "You will live, and not die, and will declare the works of the Lord." We went from the docs thinking it was spina biffida only to discover after birth it was scoliosis, and mild at that. God can do excidingly, abundantly, above all we could ask or imagine. I will definitely be reading as you post updates and I will certainly be praying for your strength.
Ryan and Rachael
Parents to Chase, Abby, Hunter, Rachel, Caleb, Hannah & Nate
~Remembering sweet baby Oliver, born to Heaven October 20, 2009, & keeping Carole in our prayers~
I had the MRI done yesterday. That was a creepy, scary experience I hope I don't ever have to repeat. *shudder* Anyway, I didn't expect to have any results yesterday, but the dr. was able to come talk to us after the procedure and give us the findings. We finally have a diagnosis, but it is not the one we had hoped for.
So 3 1/2 months of wondering came to an end when the dr. handed me a printout as we sat down at the computer screen to look at the findings from the MRI. My heart sank as I read the words "thanatophoric dysplasia" at the top. In a nutshell, this condition is the most common form of fatal dwarfism, or skeletal dysplasia. Basically, the baby's skull bones did not fuse together properly, so his brain is not forming correctly and is badly malformed. In Type II of this condition, which is what our baby appears to have, the skull forms into a cloverleaf shape, and there was no mistaking it on the computer screen. It is amazing how much more detail an MRI can give you than an ultrasound. In addition, and this is where the fatal part comes in, the baby's chest will not grow big enough to accommodate his lungs, so he will not be able to breathe properly on his own when he is born. He will most likely either be stillborn, or pass away within a few hours or days after birth. The dr. also said that there is an excess of amniotic fluid right now, which is consistent with this condition.
The dr. apologized, and I was afraid to look at my husband for fear of what the news had done to him, but my dear, dear husband looked at the dr. and said, "at least you gave us an answer." It happened to be his birthday yesterday and I felt so bad, I apologized several times on the way home that we got such bad news on his birthday. We were talking last night and I confessed that it feels sort of like a weight has been lifted, because although it's not the outcome we had hoped and prayed for, at least we now know what it is, so we can somewhat prepare for it. As much as you can prepare for something like this, anyway. I dread telling our family and friends the most, because I don't want to make anyone sad or to have them feel sorry for us. The dr. did say that the condition was caused by a single cell mutation, very random, so it is not an inherited condition. So if DH and I decide to have another child, it shouldn't happen again, which is a comforting thing when you consider that if it had been inherited, we would have a 25% chance of it happening in our next child. And that would really make me stop and think about having another one.
The concept of what will happen when the baby is born is still somewhat vague to us, as we still have 13 more weeks to go. I guess we have some tough decisions to make in the weeks ahead. Right now we are just praying for strength, courage, and the wisdom to make the right decisions.
Oh Kim, I have been praying for you, and will continue to pray for you, DH, and Austin to find the strength to get through this. It is a devastating diagnosis, and it is ok for you to feel angry, and sad. The best thing you can do for yourself is to let all of those feelings out... scream if you want to, cry if you want to. Please let me know if there is anything that you need. In the meantime, hug your little boy, and treasure the kicks and movement you feel from your baby biy inside you.
Lenora & Chris 01.16.10
DS Brandon 05.13.07
DS CJ 10.06.11
*Co-moderator of January-June '07 and September '11*
Oh Kim, I am so sorry about this devastating diagnosis. You are so fortunate to have a wonderful husband. His reaction to the latest news is priceless. Please don't stop having faith. And remember that our Junebuds group may be small in size but we are large in group love. If you need us, we will be there for you. We will all pray for you.
I am so very sorry Kim. My heart goes out to you. I will keep you, your little boy, and your family in my prayers.
So sorry to hear about this Kim....we are all thinking of u over in March10
Last edited by palagi-fob; 12-19-2009 at 12:57 AM.
I am so very sorry. I will be thinking of you and your family and praying for you all.
Kim, I'm so sorry to hear this.
I'm so sorry Kim, I've been hoping and praying for good news for you. As Kathy said, we are small but large in love, and we are all here for you. Please, let us know if we can help in any way.