The Story of QMP

It's been four years since we lost our son. There are a few people that I've opened up to about it but, I think most believe that I just miscarried a baby. Those words always feel so empty to hear. You never lose a life at any stage in development and say, 'oh, it was just a miscarriage'. Our story goes much deeper than that.

Tyler and I were elated when we learned that I was going to have a baby. I had one of those flawless, too-good-to-be-true pregnancies. I'd gained very little weight and I wasn't sick or tired. I felt great. We had an ultrasound early on in our pregnancy and heard our little baby's heartbeat. We did the proper blood work  throughout our pregnancy and I had excellent prenatal care combined with those terrible but necessary prenatal vitamins. Everything was going really well.

I was 21 weeks and 2 days pregnant on August 7, 2010 and it was finally time to have an ultrasound to find out the gender of our baby. The ultrasound technician at the hospital slathered my belly with the ultrasound jelly and we anxiously waited. He measured quietly while showing us our baby's heart. 'Do you want to know the sex?' he asked. Of course we did. That's the very reason we had came that day.. and to ensure proper development of course.  'You're having a boy.' I was beaming. I looked to Tyler and he had his proudest daddy face on. Our son wiggled inside my belly. 

The ultrasound tech continued measuring as I lay on the table.  He kept his back to me punching in numbers and dragging his curser across the screen.  To me, he seemed uninterested in our joy. I teared up thinking that his bedside manner was terrible. We were ecstatic and he just keep quiet. I changed my thought process and smiled at Tyler. We were having a son. Second to our pregnancy, that was the most wonderful news we'd ever received as a couple.  The technician handed me a tissue to clean up my stomach and printed a few ultrasound photos for us. He asked us to stay put until we were cleared by radiology so even though we felt this was strange, we stayed in the room giggling at each other for a few more minutes before being told we were free to leave.

Tyler and I had already had a power struggle of sorts when discussing baby names. If we were to have a boy, he wanted to use Quillia, a family name that I thought sounded fictitious (as it wasn't familiar to me), and I wanted Max, a name that had a negative history in his family. I knew that we were in for a ride when it came to trying to find a compromise. Let the name game begin! 

Anyway, Tyler and I were on cloud nine. We were thrilled to be having a boy and couldn't wait to share our news with our families.  First we told his mom who was working at a nursing home nearby. She joined in on our excitement. Before we could go any further in delivering our good news, my phone rang with a familiar number, my doctor's office. Dr Lira asked if I could come in to see her right away. It was Tuesday, Dr Lira's office was closed and the urgency in her voice was unsettling. My stomach immediately sank.  Tyler and I raced to her office not speaking more than a few words to each other during our drive.

When we arrived, we were ushered into an exam room by her nurse (my cousin), Tressyn. Within a few minutes Dr Lira gave us the news. Our son, was missing part of his brain. She did not have much experience with his condition but knew that medically, our child was not compatible with life. In a matter of seconds our dreams were completely shattered. Noises came from my mouth that I cannot describe, my body convulsed with emotional pain so deep that I was sure I was going to pass out. Tyler wept and we held each other. Even Dr Lira and her nurse cried at our heartache and our foreseeable loss.

We tried to collect ourselves to find out where we would go from here.  Dr Lira suggested sending me to two separate specialists, one at a Catholic hospital and one at a non-denominational hospital. We chose to have her set us up with the latter. She so accommodating and comforting and you could just feel how sad she was for us. After she witnessed the fallout of her news, she prescribed myself and Tyler Valium to help us get through the night and we were instructed to wait on a phone call from the other doctor.  

My immediate thoughts went to Harleigh and Abby. They were already so in love with this baby that I could imagine the pain they'd feel when they learned that their little brother would die. How do you explain this to a child? Will they ever understand? I couldn't bare to see the girls and disappoint them. Tyler arranged for the girls to spend some time with their biological father so that they would know as little as possible until we were ready to share with them. 

From there, we told Tyler's mom about our news and then we packed a bag at home and drove to Tyler's grandmother's house and explained everything to her. Then we went to my parents. I was hoping to share with them our wonderful news from just a few hours before but instead, we had to relay the worst. We were having a son, but he wouldn't live.

We sat completely grief stricken on my parents couch that evening sometimes sobbing and other times, staring blankly at the walls all while our son floated around in my belly. Once we finally got a call from a specialist in Louisville with our appointment time for the next day, Tyler and I tried to sleep for the night. I woke up several times in the night crying uncontrollably. Tyler would awake from his sleep and hold me while we cried together.

21 weeks and 3 days pregnant

The next morning, our mothers joined us as we met with a maternal fetal  medicine doctor, Dr Ann Clark, who gave us a name for our baby's diagnosis; Anencephaly. Anencephaly is a neural tube defect that occurs during formation of the brain and spinal cord, the neural tube does not close. Parts of the forebrain and cerebellum are not formed and what brain tissue does form, is often not covered by bone or scalp. Dr Clark gently confirmed that Dr Lira's initial thoughts on his diagnosis were true, it was 100% fatal. She pointed out the missing areas of his skull/brain on the screen. My eyes felt dry, like I couldn't cry because all of my tears had already been cried. So, I smiled, taking in my son's image and watched him float and kick around. Dr Clark referred us to perinatologist by the name of Dr Pietrantoni. We'd see him the next day.

That night brought more tears. More restless sleep. More pain.

21 weeks and 4 days pregnant 

Tyler and I saw Dr 'P'ietrantoni. Even though the days before had been painful, my heart was somehow a little lighter. He spoke matter-of-factly and clearly. Our son's condition, if he were to survive labor, would cause him to likely be blind and deaf with no sense of touch or smell.  He would more than likely be unconscious. And his organ function would be severely inhibited due to the large portions of his brain that were missing. His quality of life, if he were to survive for any brief period of time, would be extremely poor. He would live for seconds and up to hours but no more. Our son would die. I remember asking Dr P, 'why is he so active if he's so...messed up?' His answer was pretty simple, a lot of his movements were involuntary, from his spinal cord. When we asked his opinion on what we should do, we were given our 'options'.

1. We could continue to carry our son throughout my pregnancy and await his imminent death...during pregnancy, during labor, or following his birth.

2. We could go ahead and induce dilation and labor and allow him to be born now. It was unlikely that in his stage of development that even a healthy baby would survive. He would die without a doubt in labor or following.

3. We could choose to medically terminate at the hands of Dr P.  He would induce labor and I'd be put under anesthesia and fully sedated, and when I woke up, our baby would be gone.

With option #3, we had only days to make a decision. In the state of Indiana, it is illegal to conduct a medical termination in a pregnancy after 22 weeks. With option #1 and #2, Dr P warned that the condition of our son would be unpleasant and possibly emotionally damaging. My mental state had been all over the place since we were told our terrible news. I knew right away I wasn't strong enough, I couldn't see him that way.  And what would I tell my children at ages 4 & 6...That we were waiting on their brother to die? That even though right now he was moving in my belly, that he would never play with them? Tyler and I seemed to be on the same page without even speaking. 

We went home to make our decision that night. We discussed quality of life more than anything. We acknowledged his suffering and ours. We tried to make the most selfless decision for our son. We did not want to prolong anything in a effort to fulfill our selfish wishes. We held each other and talked about our dreams for our boy. 

21 weeks and 5 days pregnant

Tyler and I prepared an overnight bag at home and rented a motel room near the hospital. I was given two types of medication to kick start labor. We laid in bed next to each other that night, no longer debating on what to call him. His name would be Quillia Max.  I kept my hands on my stomach most of the evening but our boy was more still than usual. I cried throughout the night.. to myself..out loud. I was a complete wreck. Contractions began and increased through the night.

21 weeks and 6 days pregnant, 8/10/12

We arrived at the hospital and were met by our families, all there to support us. I had a constant internal dialogue in my head.. telling myself and my baby that I loved him. I loved him more than I loved myself. Every inch of my being wanted this to be a bad dream.

My husband was standing at my bedside when they took me to anesthesia. It seemed like minutes later, I woke in recovery, alone. I wasn't in any pain. But I was overwhelmingly sad. When I was finally reunited with my family, there was a lot of silence. What were you supposed to say other than 'I love you'?

I was discharged from the hospital a few hours after my procedure. Quillia's remains were sent a lab for genetic testing. No precious baby in my arms. No car seat in the back of the car. There was a real emptiness inside of my body.. and inside of my heart.

We told the girls that their little brother was very sick and he went to heaven. For weeks following our loss I was a complete basket case. I'd lay in the floor of Quillia Max's room, sobbing and clutching the clothes we had bought for him. I'd dream about him. I even carried a onsie that I'd bought for him inside my purse for over a year.

People say what doesn't kill you makes you stronger, but there is a part of me that is dead.. it's made me so hurt and numb. There isn't a day in my life that I don't think about him. Sometimes I cry, because I never got the chance to see him. Sometimes I smile, because he was loved so much. But every day, he's on my mind.