“…we knew from day one that we would carry and keep this baby as long as God allowed.”
Zayne Patrick Bennett, due July 3, 2016, Wickliffe, OH
We got married on August 8th, 2015, it was the best day of our lives! We desperately wanted to be parents, and had been dreaming about our first child together for a long time! We saw our first big fat positive pregnancy test on October 19th, and so the adventure began.
It started out pretty normal. On November 9th we saw the first tiny flutter of a heartbeat on the ultrasound, and doctors set the due date as July 3rd, 2016. A month later on December 9th, we heard the heartbeat for the first time! It was 170 BPM! Everyone said it was a girl, but Mommy knew in her heart that they were expecting a little boy. At this same appointment blood was drawn to test for different chromosomal abnormalities, including Trisomy 13, Trisomy 18 and Trisomy 21.
On December 23rd we received a life altering call informing us that our baby had a 72% chance of having Trisomy 18. This call was followed up with a whirlwind of doctors appointments, meetings with hospital staff that had little to no compassion. We were asked multiple times if we wanted to terminate the pregnancy, it was mentioned so frequently it became clear that this was their preferred method of dealing with this “situation”.
We had a slew tests done, wanting absolute confirmation of what was going on with our tiny baby. After a nuchal translucency scan, ultrasound and amniocentesis it was confirmed that we were carrying a little boy, and he does in fact have full Trisomy 18.
As I write this I am 20 weeks along. We are halfway through what has been the most heart wrenching, challenging, infuriating, humbling experience of our lives. Because this condition is so rare many in the medical field are uneducated, and have made us feel like we are wrong by carrying on. However we knew from day one that we would carry and keep this baby as long as God allowed. We recently switched hospitals and have been assigned a mostly wonderful hospital staff who values this little life, no matter how chromosomally abnormal he is.
Baby Zayne’s condition is on the very severe side. He has a very serious heart defect, he has an omphalocele, which means some of his organs including his liver are on the outside of his body, and his right arm is underdeveloped. Regardless of all of this, we are so in love with this little man, and we want him to feel this love every day of his short life.
We pray every night for some kind of miracle, but know miracles come in all shapes and sizes. My miracle would be delivering Zayne alive, and getting to hold him in our arms for a few hours. The heartbreaking reality of Trisomy 18 is that it is fatal. We have learned to cherish each moment that we have. Every little kick and movement, every new sensation.