Trisomy18 Warrior

“On New Years Eve of 2021 I went into labor by surprise at 37wks & 1 day. We headed to the birth center & things were progressing well! Around noon we thought things were progressing, our sweet Evalyn shifted out of the birth canal, my midwife checked and attempted to help me get her back into position. After several different laboring positions our baby girl’s heart rate was dropping to the 60’s during contractions, they immediately called 911.

My midwife rode in the ambulance with me! She kept the doppler on Evalyn’s heart and during the ride her heart was no longer stabilizing after contractions, it was skyrocketing to the 180s-190s. My midwife stressed the whole way there they needed to be prepared for a c-section or the baby was going to die. When we arrived to the hospital with no doors unlocked or security guard in sight they informed us they had no idea we were coming. They failed to be prepared and I felt her right in the birth canal. I did what I could to deliver her naturally as they wheeled me to the OR. An abundance of blood was delivered with our purple and lifeless baby girl!

Everyone was trying to do what they could with what little resources they had to help her. They did chest compressions, they used the defibrillator and got her heart back after 2-3 minutes and had to bag her for 20 in order for her to remain alive. Eventually the emergency NICU transport unit arrived and so began our NICU journey.

Within 36 hours of delivering our baby girl, we had to hand her over for a TEFistual repair, a surgery to connect her stomach and esophagus. Then 5 days into her life we were given an official diagnosis of Trisomy18, Edwards Syndrome. From then on we had to decide what our goals were for her and absorb the doom and gloom information we were given. We stayed in NICU for 31 days, we went home on hospice anticipating her early departure from the world! She received a heart repair at 4 months old and is now the happiest, and sweetest 2 year old around!“ NICU Mom, Amber