Steve and Elizabeth were blessed to find out that they would be expecting their second child in 2017. On December 29, 2017 a baby girl, Emery, was born via C-Section. Within minutes it was noticed that Emery was not able to properly breathe on her own and had abnormalities to her extremities. The symptoms Emery showed required special care that only Cincinnati Children’s Hospital Medical Center could provide. The family was able to spend a short time to meet Emery before she was whisked away by ambulance to CCHMC.
Emery was admitted to the NICU at CCHMC a few hours after delivery. Mom, Elizabeth, could not leave the hospital so soon after delivery so dad, Steve, accompanied Emery alone to CCHMC where she was examined by many doctors to determine her diagnosis. After testing of all kinds had been performed, including genetic testing, a week later we were told the devastating news that Emery was born with Trisomy 18, also known as Edward’s Syndrome. Her prognosis of life was unknown, but most likely short.
Trisomy 18 is a chromosomal abnormality. A “trisomy” means that the baby has an extra chromosome in some or all of the body’s cells. In the case of Trisomy 18, the baby has three copies of chromosome number 18. This causes many of the baby’s organs to develop in an abnormal way. Because Trisomy 18 causes such serious physical defects, many babies with the condition don’t survive to birth. About half of babies who are carried to full term are stillborn, with boy babies more likely to be stillborn than girls.
After receiving the devastating diagnosis, doctors at CCHMC advised us to take our baby home, love her and make memories for as long as she would be here with us. Our sweet baby girl went to heaven on June 16, 2018. She was 5 ½ months old.
During the precious time we were blessed to have with Emery, CCHMC StarShine Hospice provided us with immeasurable support. They provided us with all the medical equipment necessary for us to care for her special needs. They sent an “army” of care takers - doctors, nurses, social workers, therapists for emotional support for the family, Child Life therapists that provided music and art therapy for Emery’s big brother, Braxton. All of this is offered at no expense.
Without StarShine Hospice, our journey caring for Emery would have been even more difficult. Their support allowed us to love and care for our sweet baby in the comfort of our home for 5 ½ months. EJ’S Promise is honored to raise funds for StarShine so that they may continue their invaluable work helping families across the Cincinnati area.
To find out more about CCHMC Starshine Hospice, go to https://www.cincinnatichildrens.org/service/p/palliative-care/starshine-hospice