Introductions

September 9th was my fifth wedding anniversary - a day my husband and I had dedicated to finally spending one full, celebratory occasion together. With a slight hitch in our plans, we had to attend an ultrasound of our unborn baby to determine it's gender and measurements. It wasn't an unhappy addition to the day and we were making bets on whether the baby would turn out to be a boy or a girl. I won. We are having a girl.

The ultrasound had gone on for more than half an hour, much longer than I expected. The good news was suddenly dwarfed when our technician said something along the lines of some findings looking "concerning". Something about the brain.. the heart... the lip. She quickly ushered us into a private room and there we waited in fear for our doctor, Dr. Breland.

I cried. My husband, Phillip, sat quietly, handing me tissues. Breland finally arrived and told us that our unborn girl had enlarged ventricles in her brain. Her lip seemed to be cleft and her heart had begun growing on the wrong side of her chest. He wasn't sure what all of the symptoms meant but he was concerned enough to contact the Sacred Heart Health System in Pensacola and schedule a next day appointment with a perinatal specialist. He assured us that Sacred Heart would conduct the appropriate testing on the fetus and let us know what to expect concerning her health. It was frightening to know that a perinatal specialist was willing to see us so quickly, especially considering the fact that appointments with doctors of that caliber are nearly impossible to get and usually involve a wait of weeks or months.

We left confused, but hopeful. We stayed hopeful through the drive to Pensacola. We were hopeful (and tired) through the initial ultrasound and even chatted casually with our technician, discussing baby names and birth control. By this point, being only slightly fearful of what waited in our daughter's future, we named her Beckett Etalei, determined to make her as much of a real person as she could be.

The specialist, Dr. Dobak, conducted a second ultrasound and, with his hand reassuringly on my leg, let us know of the findings. Beckett's heart was indeed on the right side of her chest, though it was beating fast and strong. The left side of her chest was filled with her stomach and intestines, having seeped in through a hole in her diaphragm, known as a diaphragmatic hernia. The displacement of her organs wasn't allowing her lungs to form properly and he feared she would never learn to breathe. Her brain was as Breland feared, full of enlarged ventricles, fluid and other various holes. Dr. Dobak explained that a brain in this condition would not sustain life and was probably caused by a chromosome defect known as Trisomy. (I'll explain this condition further next week) The defect, we're told, is rare and occurs once in 25,000 babies. To top it all off, the normal formation of her face was marred by a cleft lip, which is probably the result of the same chromosome defect.

Stunned, we also learned that her chances of making it to her delivery date alive were slim. If she manages to survive until birth, Dr. Dobak does not expect her to live longer than a few hours. Some lucky families get a few days or weeks with their children if they have this particular Trisomy defect, but survival is almost entirely unheard of.

The visit included an amniocentesis. The information would be able to determine exactly which chromosome had malfunctioned in Beckett's creation and would give us more clues on how long we could expect to have our baby girl with us. The results from that test come Monday. We met with a genetic counselor who will be assisting us through the process of carrying Beckett and ushering her on to her next phase, whether that be surgery to correct her heart and other organs after delivery, or a quiet passing due to the Trisomy.

Medically, our next steps include weekly ultrasounds to make sure Beckett is still alive in utero. We'll be keeping a close eye on how she functions and grows until her estimated due date of January 20th. In all other aspects, we're trying to stay level-headed about how we should proceed. We have discussed funeral homes, burial plots and what colours her funeral dress and flowers should be.

There is very little hope so far, but we haven't extinguished the thought of Beckett surviving. With more information available only after Monday, we can't do much but wait.