FirstTimer02

careyalis · May 2012

I have been bad at keeping up with all of the intros, but I wanted to introduce myself and let you know that I am here if you need anything. My name is Carey and my daughter Avery had Thanatophoric Dysplasia. We found out at my anatomy scan and I was able to carry her for 3 more months before I went into labor on 2/16/12. If you have any questions about what to expect, or just want to chat, I'm here!

FirstTimer02 · May 2012

Thank you!!!!

We learned this week that our little guy probably has Thanatophoric Dysplasia, or Osteogenesis Imperfecta Type II. We're doing some genetic testing and might know the diagnosis in a couple weeks, but whatever it is, everyone feels sure that his ribcage is too small for his lungs to develop right (it's in the 10% percentile for growth at ~20 weeks, and looked even smaller proportionally than it did at 18 weeks).

Did you carry her almost to term? Or did labor come early?

I am having a hard time thinking about terminating, but I am also worried that if I try to carry to term, he will get bigger and more and more squooshed as his rib cage squooshes him and as he has less space to rock out inside me. Right now he seems to be having fun swimming around, even with his little arms and legs... but again he's only 20 weeks and he's already like popping out of his tiny chest cavity. It feels like he's just going to get sicker over time, and I worry that I can't take good enough care of him, even while he's inside me. I want him to go as peacefully and be as well cared for as possible.

We got hooked up with an awesome perinatal palliative team who will support and help us whether we decide to terminate (within the next 3 weeks) or carry to term. That takes a lot of the stress off. I am trying to reflect on what will be best for him. It's hard with so many unknowns but I sorta feel like at some point I will just "know."

I think the hardest part is there's so much I want to give him and it's hard to think of ways I can actually give to him and take care of him.

It would help to hear whatever you'd like to share about your story.

I don't know how to message or chat people yet, but if you give me a hint I will figure it out. :-) Thank you!!!

FirstTimer02 · May 2012

If you don't mind, it would help me to hear what it was like when she got bigger inside you. How did she feel? Did she still move a lot? Did you sense that she was OK, comfortable? How was the birth? Only if you are comfortable. It will help me to understand what it all might be like for my little guy. I worry about him more if it's OI type II because they tend to get lots of fractures in utero. It seems a little likelier to be TD though. I still worry about his little chest hurting him as he gets bigger.

Thank you for sharing her picture. She's a cutie pie. :-)

careyalis · May 2012

I would love to talk to you about all of that! I know how scary it is right now and I am happy to do whatever it takes to help. I don't know if I can pm from my phone, but I will try and pm you my phone number. I am at a wedding rehearsal now, but I can call you in the morning if you would like.

careyalis · May 2012

Okay, I can't send private message from my phone. If you look at the bottom of my post, click "contact" and send me a private message with your number and I will call you in the morning. Hang in there!

FirstTimer02 · May 2012

Thank you! Not disappearing, I swear -- just having a wknd with my mom and will take a couple days to talk to Daddy too. Thank you so much :-)

LuckEinLuv · May 2012

Sorry to hijack the post, but I just want to tell you FirstTimer that whether you decide to CTT or TFMR, there are women on this board who understand and will support you. ((Big Hugs))