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Welcome, @kbreder. I'd like to bring @amandacgrow and @kristap31 into this discussion. While they may not have experience with disseminated intravascular coagulation (DIC), they have experience with serious illness at the birth of a child. I think they will also related to the PTSD feelings. Kbreder, were you in ICU too?

I'm so sorry to hear of the complications you've had. Did your healthcare team find the underlying condition that caused you to develop DIC? Are you in the care of specialists who understand DIC? And how's that little baby of yours who is almost 2 years old?

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Replies to "Welcome, @kbreder. I'd like to bring @amandacgrow and @kristap31 into this discussion. While they may not..."

I was in the ICU for a couple of days and then released to the OB floor to recover for a week. I was released from the hospital with only the typical 6 week follow up appointment, so I'm not in the care of any specialist. I am speaking with Dr. Cope from Mayo this week though, so I'm hoping to get more answers. As for the underlying issue, im not sure. I had a previa, and some other risk factors for hemorrhage. The hemorrhage was a slow bleed within my uterus. Ive been told it was because my uterus didn't contract like it should have. I started showing symptoms about 10 hours after birth, but my bleeding wasnt discovered for another 6 hours, so i think its just because i was bleeding for so long.

My baby is doing amazing though he's a perfectly healthy baby. You can't even tell he was born at 33 weeks, he's at the top of the growth chart even! Definitely blessed in that area!

Hi @kbreder ,

My name is Amanda. I am so glad you found this group. I hope you will feel a sense of support and connection here.

I will share a little bit of my story. My son was born via C-Section in February 2018. Shortly after his birth, my blood pressure dropped rapidly and I was rushed to the Shock Trauma ICU. I was experiencing DIC, most likely from a rare condition known as Amniotic Fluid Embolism. Over the next four hours, I was in surgery for an emergency hysterectomy and blood transfusions of more than 75 units of blood. A social worker was sent out to tell my family I was "actively dying". I survived, but had a difficult road to recovery. I was in a coma for seven days, then in the ICU for several more weeks.

I can very much relate to your words, "life has been so very different". A mentor for me in this group helped me realize that life altering medical experiences like ours often necessitate a need for grieving. It seems strange to be grieving since no one has died, but we must acknowledge the losses and changes we have experienced.

Understanding the nature of PICS and Post Traumatic Stress has also been important in my recovery.

If you are interested, I'd be happy to share more that has helped me, but I don't want to overwhelm.

Best wishes to you, my new survivor friend.

Amanda Grow