"One assumes that everything is going to turn out like some romantic comedy, but most engagements end up like Saving Private Ryan. Good luck."

I finally sent the email to my family, I was waiting to have my questions answered from the genetic counselor but they are taking forever to get back to me and I felt like I was avoiding writing here until that was completed. Like no writing was allowed until that was sent. Now I'm zausted and have a wicked urge to go organize my bathroom cupboards. This is my defense mechanism. When shit gets too crazy in my head or my life I organize the shit out of something and when the buzzing starts again I go open the cupboard and stare lovingly at the orderly safeness of it. Is that weird? I don't care. I'm including the letter because I'm feeling like an exposed nerve ending and I need a couple back pats/it's all rights, even if I did shitty. I did not know what to write.


Hi everyone. We just recently (finally) received the autopsy results of our lost little one, and I thought I'd share the information. I don't know what took so long, but at least they are here now. I appreciate having if not your understanding, then at least you not having hurt feelings by how little I talk about our babies that we've lost. I don't mean to keep things from you, or not let you in, it's just too hard for me to speak about. I try not to bottle up all the feelings and emotions, I do have other outlets, and I'm trying my best to live through this.

From the ultra sounds there were 2 possible things wrong with the baby. Autosomal recessive polycystic kidney disease or multicystic renal dysplasia. The chance for recurrence in a future pregnancy with ARPKD is 1 in 4. The chance for recurrence with MRD is unlikely. No numbers provided.

The findings are divided, with nothing definite on either side. The pathologist who performed the autopsy concluded the findings are most consistent with MRD but the diagnosis of ARPKD can not be ruled out. The clinical geneticist reviewed the results and concludes that the diagnosis of ARPKD is more likely than MRD. Not really helpful, but all information is appreciated.

There is no prevention, early screening or cure for either. Should we decide to get pregnant again we will just have to take our chances. Between weeks 11-13 we'd go to the ultra sound specialist to see if the kidneys look "bright" and go from there. Otherwise we'd have to wait until weeks 15-20 when all of the symptoms became apparent with the lost little one to see if there is anything wrong. It would be an extremely stressful pregnancy to say the least, so I guess we will have to decide whether our want for another baby and sibling for G is higher than our desire to avoid the possibility of more heartbreak.

I do have more questions for the genetic counselor, such as if this will affect G's reproduction, or our siblings. If there is chances of lesser forms of this happening, where the baby would be sick, but able to live, and the specific reasons the diagnoises were made; what symptoms pointed to what. I've left messages, but so far I haven't heard back.

Thank you for your love and support.

Love,
Amelia


Christ even posting it here makes my anxiety level go up. If you need me I'll be sitting on my bathroom floor sorting and wondering if soap expires.