As told by his mother, Jessica.
We were so excited the day of my 20 week ultrasound. My husband Tristin was holding our two older boys, Sherman (3) and Oliver (1) on his lap. We found out that we were having another boy! I wish that is all we found out that day.
I went into my doctor’s appointment an hour later alone. The midwife sat down with me and told me that there was something wrong with our baby and that he was missing the front part of his brain. That is all the midwife could tell me, because she herself had no idea just exactly what that meant. I was to be sent to a specialist the next day.
I remember crying the whole way home and telling my baby that we were going to be okay over and over again. I had to tell Tristin the horrible news and watch his heart break before my eyes. I then told Tristin that we needed to give this baby a strong name. Tristin instantly knew he wanted to name him Zeek.
Neither of us got any sleep that night. After meeting the specialist we were told that Zeek had a brain disorder called Alobar Holoprosencephaly (HPE).We were then told that chances of him being born alive were very small. We were also given the option to have an abortion. Honestly, we thought about that option a lot and at some point seriously considered it, but in the end, we decided to go on with the pregnancy and give Zeek any chance he could have.
From that point on, my pregnancy was anything but normal. We spent it looking for funeral homes, and planning on what we wanted Zeek to be wearing after he had already passed away. Nobody should ever have to think of things like that when getting ready to have a baby. I was induced a month before my due date because Zeek’s head was getting too big, and the doctor was afraid I wouldn’t be able to deliver naturally if we waited any longer. I opted not to have my labor monitored for fear that if I were told Zeek had passed away, I wouldn’t be strong enough to go through with the rest of delivery.
To everyone’s surprise, Zeek was born crying; he even peed on the doctor on the way out. I bawled like a baby when the doctor placed Zeek on my chest. Not for a second did I ever let myself even think that this was a possibility. We were then able to take Zeek home, and every day with him was an unexpected blessing. As each day passed, I allowed myself to picture a future with Zeek, but sadly on the 9th day of Zeek’s life, I awoke to Zeek, freezing cold and then I noticed his breathing was very shallow.
After waking up Tristin we decided to call hospice. When the nurse arrived, she told us that it was time for Zeek to go. I held Zeek as he took his last breath. There’s not a day that goes by that I don’t think about him, and there is rarely a night that I don’t cry myself to sleep. Even though Zeek lost the fight to his brain disorder, he never once let it define him. According to his brain disorder, Zeek wasn’t supposed to be born alive, and if he did, he wasn’t expected to live past 24 hours.
We were able to love and hold Zeek in our arms for 9 beautiful days and even with all the heart ache I carry from that, I wouldn’t change a thing.
Zeek Hope Austin 08/26/15-09/04/15
Alobar HPE ain’t got nothin’ on me.
