holoprosencephaly

MsKayDe

Hi everyone 

At 16 weeks , I went in for an ultrasound. I'm already high risk due to loosing my daughter at 26 weeks. The Perinatologist said that my baby has a brain deformity called holoprosencephaly. I've never heard of this. She just handed me a paper she printed off a medical website with all types of words I don't understand. Google was no help it only made me cry worse. She gave me no hope and actually looked insulted when I said I would not abort my baby. Has anyone dealt with something like this or know anyone that has? I don't know what to do. I am going to seek a second opinion because she stopped answering any questions I have had. Thank you. 

ElizaAnne

I would try to find another doctor who is more understanding and willing to talk to you about what this is/means and how your baby will be affected.  I just did a little research to enlighten myself after reading your post because I had never heard of such a condition, and from what I've read this doesn't look good.  Apparently it's something that cuses really terrible facial deformities because the brain doesn't develop?  I really think a second opinion is your best course of action.  You're in my thoughts, and I hope you have a good support system of friends and family around you during these trying times.  If you want to talk you can message me here.  Hopefully a second doctor or someone on here may have more information for you.   

MsKayDe

Thank you. 
I am going to get a second opinion. It's just been really hard trying to get the high risk doctor to answer my questions which adds more stress than necessary. 
I did more research and there are 3 different classifications and it all depends on the severity of the condition ad far as deformaties go... I just want more than a 2 minute ultrasound and a doctor saying abort my baby. I'm hoping to find a second doctor to do more research and give me more information. It's hard when you look to your doctor's and their only answer is abort 

ElizaAnne

I agree!  I hope another dr can give you more information, maybe even help you ballpark the severity of the condition your baby has.  An informed decision is the best decision.  Good luck!

MsKayDe

Thank you . And thank you for responding. I go see a midwife on Tuesday although I'm thinking about changing my doctors all together. I'm scared and the doctors are making it worse. I lost my daughter at 27 weeks she was born early and died two days later. Not sure how much more I can take. I'm overwhelmed as it is. 

Ceridwen77

I don't have advice but wanted to say I'm sorry you're dealing with this. Please keep us updated on your second opinion. Good luck. 

Ju111310

I'm so sorry you're going through this & sorry for your previous loss. As I'm sure your research showed you, the outcomes with this condition can vary greatly. When I worked as a NICU nurse, I saw two very different cases of holopro. I encourage you to go look up "MEM's journey" on Facebook. It's a page documenting the journey of a little girl with holopro and I bet her mother could get you in touch with lots of other moms of holopro babies and support groups. Best of luck to you! 

MsKayDe

Thank you. I will look that up as well. 

MsKayDe

I had another doctor visit this past week. While the diagnosis is still the same as far as being diagnosed with Holoprosencephaly,  but the new Perinatologist did give me more information. The front part of my baby's brain did not form correctly.  The rest of her brain is fine. She will have a rough road but so far she is doing good... 17 more weeks to go and she will be here.

JennyS86

prayers to your family and God Bless.