Emily's Birth

Time was of the essence as Emily's heart was decelling rapidly. They threw a bag of scrubs to Craig as they rushed me into the OR for an emergency C-section under general anesthesia. The doctor had some difficulty extracting Emily. She was so little - only 3 pounds 2.1 oz. and 15 inches long. Gestation 34.5 weeks.

At birth, Emily was limp, apneic and poorly perfused. She received blow-by oxygen during the first seconds of life. Her heart rate remained good throughout and within a minute of birth, she started pinking up. Her respiratory effort was slow so they used a bag and mask for respiratory support for about 4 minutes. She continued to have significant respiratory distress and required a second brief period of ventilation, then was placed on a nasal CPAP with moistened room air. Her Apagars were 4, 5 & 8 at one, five and ten minutes respectively. She never needed a ventilator. Her chest retracted a lot as she struggled to breathe.

They put a feeding tube in her mouth and down her throat to her stomach for nourishment, which she was unable to tolerate at first. She had an IV and was quite a sight. She was so small, thin and dark colored from jaundice. She looked sorta like a little shriveled up old person. She didn't even have a butt crack - just a little seam because there was no fat in her butt cheeks.

She looked so helpless lying there in her little incubator, struggling for life. When relatives visited there were tons of tears. It felt like we were looking at a dead body at a funeral.

Blood tests were performed and rushed off to be analyzed by Genetic specialists at Hershey Medical. Two days later we found out that Emily had a genetic disorder called Trisomy 18 or Edward's Syndrome. This means that there are 3 copies of the number 18 chromosome in each cell of her body rather than the usual pair. (For more info on Trisomy 18 see link.)

We were given such a grim prognosis that we didn't know what to do. Our wishes were that she be treated as every other newborn/preemie (to be fed, helped to breathe, loved), with the exception of baby shots and excessive bloodwork, poking or prodding. At that point in time, they were preparing us for her death and would have allowed us to take her home to die. Not knowing what else to do, we signed a "Do Not Resusitate" order, left her stay in the NICU to be cared for appropriately for a preemie, and sent out the prayer requests for a miracle!

We got our miracle... God is good! Emily is a fighter! She spent the first 5 weeks of her life in the NICU, struggling with apnea and bradys like other preemies, while becoming stronger by the day. She was on a rollercoaster for a while, but ended up strong enough to come home exactly 5 weeks later - on her original due date, August 11, 2001! To continue story click on green link.