9 years after our 100-day stay at the NICU, I was suddenly paralyzed by PTSD. Every horrible feeling of fear, anxiety, despair, and anger came flooding back all at once, as a sucker punch to the gut. Emotional scars I thought long healed were bleeding again, as I hurt for my friend and for my own experiences.
“We have a unique approach that is a technique first established in Brazil by Dr. Lapa, and we brought it over to the United States. Dr. Quintero and I have put together a fetoscopic treatment that is FDA approved to repair open spina bifida, that is entirely percutaneous (there is no laparotomy and no hysterectomy),” said Dr. Ramen Chmait, Director, Los Angeles Fetal Surgery.
I saw my physician’s name come across my phone screen, and my heart sank. He explained that the ultrasound showed an abnormality, and he predicted a spina bifida diagnosis. I had no idea what that meant, and the rest of the words coming out of his mouth became a blur.
I was so, so terrified. Not for me, but for her. Would she be okay? Would she be in pain? Please just save her! As I wheeled away from my family, the only feeling I remember is fear. In the OR, faces I didn’t know surrounded me. I was squeezing the hand of a person I’d never met as they prepped me for the emergency C-section.
Spina bifida, which literally means “cleft or split spine,” is the most common permanently disabling birth defect in the United States. According to the Centers for Disease Control and Prevention, about 1,645 babies are born in the U.S. with spina bifida each year.
“There’s a major problem with your pregnancy.” Are words no expecting parents anticipate hearing. At our routine twenty-week ultrasound, the ultrasound technician got the doctor, and we heard the words that would forever change our lives. “The bladder isn’t releasing urine” and “the amniotic fluid level is dangerously low.”