I will never forget the day we found out that Lorris had trisomy 18.
We left the specialist’s office on Monday morning after the doctor told us that Lorris showed many signs of Trisomy 18. I had an amniocentesis before we left that day that would let us know for sure. He told us that he would have the initial report back on Friday and that he would be calling us.
On Friday August 5th my boys were both in school and Marty was traveling home from a meeting out of town. My family knew I was supposed to get the results and I think they all had a plan to make sure that I wasn’t alone when I did. Throughout the day I had family stopping in and then Marty’s mom and dad came by just before lunch. They were with me when I got the call.
Even though I was expecting it, my heart still jumped into my throat when the phone rang. I looked at the caller ID and was surprised to see that the number wasn’t from my specialist’s office but from my regular Obstetrician.
“Jenny, this is Dr. Gass. The maternal fetal medicine group called me and gave me the results of your amnio. They wanted me to call you because they thought that it might be easier hearing it from me. I’m so sorry, but the amnio results show that Lorris has trisomy 18.”
The rest of the details are sketchy for me. I remember hearing,
“I’m sorry.”
“They want to see you Monday.”
“I’m so sorry”
Marty’s mom was standing right beside me when I answered the phone. I’m sure she knew before I could even tell her what the Dr. had said. As soon as I hung up she hugged me, it was all I could do not to fall apart. I called Marty, I hated for him to find out while he was driving but there was just no way around it. He said he would be home as soon as he could get there. Marty’s parents stayed with me until it was time for them to get the boys from school. They, along with Marty’s brother Brad and his wife Erin had already planned on taking the boys to a baseball game that night and we decided that they should go ahead as planned. Taking them for the evening would also give Marty and I some time alone to talk.
Before he got home I had looked online and all the information about Trisomy 18 seemed so hopeless. More often than not mothers wrote about their little ones in past tense referencing the day they got their “angel wings.” Baby after baby died before their first birthday, often before they were even born. Occasionally I would find a little one that was beating the odds who had lived beyond their first birthday but not without severe medical challenges
Looking back, I think that is when my grieving officially started. The life I had imagined for Lorris was not going to happen, it was going to look completely different.
I just had no idea how different.
I’m going to be completely candid with you. I was heartbroken, but I was also scared to death.
Scared of her dying.
Scared of what her life would look like if she lived.
And if I’m being completely and totally honest it was hard to say which scenario was more frightening to me.
I was terrified that I did not possess within me what was needed to deal with any tiny part of it all, let alone all of it.
When Marty got home that evening he sat for the longest time not saying a word. I can’t imagine what that whole day had been like for him. Being on the road, getting the news, knowing the reality he was coming home to must have been heartbreaking. He couldn’t find the words to comfort either of us so he sat in silence for the longest time. I finally climbed up in his lap, cupped his face in my hands and the tears flowed for both of us. We sat like that a long time in the dark of our living room.
One thing I remember Marty saying was, “Jenny honey, Lorris isn’t going to live, you know that right?”
My response was, “We don’t know that for sure, let’s wait until Monday and see what we find out.”
Looking back on how things unfolded later with her birth, I really believe with all my heart that Marty just knew. He wasn’t being negative, he just knew. God gave him that.
Our boys were going to be arriving home soon and we decided we would wait until after our appointment Monday to tell them about their sister’s condition. I couldn’t prepare my boys because I wasn’t even close to being prepared myself.