Bentley's Story, by his Mama

Written by Ashley Bowman

December 24th 2013, the day we got a positive pregnancy test. I remember being so excited I almost couldn't wait for my husband to get home to tell him, he ALMOST found out over the phone. We had been trying to get pregnant since July and although it didn't take but a few months, it felt like forever every time I had a negative pregnancy test. At one point I remember thinking to myself: you have two healthy children and maybe you should just be happy with that. I look back at that now like it was some sort of foreshadowing for what we were about to experience in the future, as crazy as that sounds.

We already had two beautiful children; Riley, who is 8 years old going on 16 and Hunter, he was 3 at the time. This baby was going to be our last. I remember being so happy and sad at the same time knowing that this was the last time I would experience all the joys of being pregnant. The next few days at several different Christmas parties it was hard not to scream the news but we wanted to wait until after the first doctors appointment to make sure everything was okay. It felt like forever until January 22nd was here and we had our first appointment. Everything seemed to be going great and we even got our first picture of our little peanut, I remember being really happy with our choice in doctor as she was going to be taking extra precautions due to my history of eclampsia. That evening after our appointment; we went from house to house telling our family. Everyone seemed to be so happy and excited for us. It finally felt official that we would be completing our family in September.
      
As the weeks went by everything continued to go as planned until March 6th, the day we were supposed to find out the sex of our baby. My doctors office had a special package where you could find out as soon as 14 weeks what you were having and the anticipation was killing my husband so we opted to find out early. I think deep down I always sensed that something was wrong, I am not sure how as everything pregnancy wise was going fine. I can't explain it, I just knew but as the ultrasound tech started measuring things during the ultrasound I just knew something was wrong(she told us she wouldn't be doing any measurements since it was an elective ultrasound). She told us we were having a little girl but still continued to take measurements, I then asked her "Does everything look okay?" She told us she wasn't sure and that she needed to get the doctor. The rest is kind of a blur, I was in shock even though I had already sensed something was wrong. We left the doctors office with very few questions answered and told that we needed to see a specialist. When they said things didn't look quite right with the brain, I was thinking we would have a child with special needs and I thought we can do this.

I think I fell more in love with my husband during the time between the ultrasound and waiting to get into the specialist. He was so supportive during that time and he was ready to conquer whatever was to come, together. We spent a lot of time on the Internet over the next five days before the appointment with the specialist. It was full of stories from parents who were told their children had birth defects and they were born perfectly healthy. FALSE HOPE.
   
Finally after five excruciating days, it was time for our appointment. After a long and extensive 2nd level ultrasound we were taken to a consult room where the doctor wanted to talk to us. That's where I first heard the worst words ever. INCOMPATIBLE WITH LIFE. The specialist then went on to say we had an extremely high chance of miscarriage or stillbirth, and that if the baby even survived birth that we would never take her home. He then began talking about our options, explaining that unfortunately there is only one word for terminating a pregnancy but that our situation was very different from one where someone simply just didn't want a child at this time. He also suggested we have an amniocentesis done to make sure what was wrong with our baby was not something genetic that my husband or I carried, this would also let us know if our other children were at risk for complications when they had children. We opted to have it done.

Over the next few days, my husband and I spent a lot of time crying and barely sleeping at all. We had a lot to think about and decide. I have always been against abortion but I am not going to lie, we did talk about it and even called to get information about the procedure. I was so worried that if I continued with the pregnancy that our baby would suffer or be in pain. The decision was the hardest I have ever had to make but we decided to continue with the pregnancy, I had faith that God had a plan for our baby and that we would let God/our baby make the decision on when she was to leave us. We decided that even if we only got to spend five minutes with her alive that it would be worth it. I am still so grateful for the decision we chose. I read so many stories of people who made the same decision as us and continued their pregnancy despite the grim diagnosis for their babies, these people had beautiful stories of the time they did share with their child. I knew then I had made the right decision.

A week after my initial specialist appointment we had our preliminary results for the amino, they told us so far chromosome wise everything was coming back normal and they also let us know we were in fact having another little boy, not a girl. I remember thinking that maybe the doctor was wrong and that our baby was actually perfectly healthy. Once again that was false hope, we received our final amino results and found out our baby had not one but three chromosomal abnormalities. He had a partial trisomy of chromosome 3 and 8, as well as a deletion of 8. We did find out that it was just a fluke thing that occurred during cell division, I was grateful for that at least. I was so worried if they said it was a genetic disorder my husband carried, that he would just blame himself and would never be the same. I was already blaming myself, thinking that it was my body that did this to our baby, that somehow I could have done something different. I know now there wasn't anything I could or couldn't have done differently, unfortunately these things just happen. After we had let people know of the complications and our decision to continue the pregnancy it was extremely hard to not break down every time someone who didn't know what was going on would ask about the pregnancy or ask me when I was due. Most of the time I would just smile, act like everything was okay and answer politely but deep down it crushed me. I'd have to say the hardest thing though was when people who did know asked questions or said offensive things that they probably had no idea were offensive. I came to realize that people just don't know what to say so they usually say the wrong things.

As the weeks went on, our little man started moving more and more every day. It was hard to believe there was something so wrong that he wouldn't be able to survive when he was moving just like a healthy baby would. I was thankful for every kick I felt, even at 3 am. Every day that passed was one step closer to my due date and getting to meet our little guy. I will say it was terrifying, every little pain or ache had me scared that this was it and we were going to lose him. I spent the whole pregnancy after that diagnosis in fear. I sometimes had wished we never knew that something was wrong, that maybe it would have been better to be able to enjoy every moment of my pregnancy with him but I am sure it would have hurt all the same. Knowing what I did took most of the joy out of being pregnant. When you are facing something like this, you don't decorate a nursery or buy any baby things really, you spend more time thinking about funeral arrangements. However, the closer we got to our due date, I decided to buy a few things because I didn't want to be completely unprepared if in fact he did get to come home. A wonderful friend of mine purchased a maternity photo session for us and to this day I am still so grateful to her that she did that because I don't think we would have done them otherwise.

Pregnancy wise everything was still going well and Bentley's (We finally agreed on a name around May) heart beat was still strong. My regular OB doctor was amazing, she never once made my baby seem less important than a healthy one. She constantly told us that we didn't know for sure what would happen and that nothing was guaranteed. She had such hope, I loved her for that. Things made a turn for the worse around 32 weeks when an ultrasound showed that there was decreased blood flow to Bentley through the umbilical cord(a problem that is completely unrelated to Bentley's complications) They told us there was a good chance that the blood flow could pick back up or stop completely. I bawled my eyes out the whole way home from the appointment, which unfortunately was the only appointment my whole pregnancy that my husband wasn't able to attend. I obviously knew what was to come, but I realized then I wasn't ready for it. I wasn't ready to lose Bentley or to say goodbye. I spent the next two weeks freaking out every time I didn't think I had felt him move in awhile, I would then get out our home doppler to find his heart beat and was relieved every time it was still there. Around the same time we found out about the blood flow we also planned our c section date as one of Bentley's complications was hydrocephalus, his head was measuring several weeks ahead and it was too risky to try for a vaginal birth. Our c-section was scheduled for August 25th and I was pretty confident that we would make it to that date.

That all changed. On August 1st at around 2:45am, my water broke in bed. I jumped up and woke my husband. We then packed up the kids and headed to the hospital. We got there and they confirmed that my water did in fact break. They called my doctor and my c section was planned for 5:30am. I was so scared, I wasn't ready for this. I never would've been though. No parent is ever ready to say goodbye to their child forever. I told the nurses who were explaining the surgery to me that we only wanted comfort care for Bentley. We wanted him handed right to us as time was so precious. At 6:01am, Bentley was born. They let my mom in right after they had him out so she could take photos of my husband and I with our baby boy. He was beautiful, I didn't expect him to be that beautiful but he was. And he was breathing!

 

They sewed me up and took us right to our recovery room where all of our closest family and friends got to come meet Bentley, including his very proud big sister and brother. At 7:00am, he took his last breath. He lived for 59 minutes and although I wish we could have just got even 5 minutes longer, I know it still wouldn't have been enough. I am still so very thankful to God for letting us meet our son. It was the saddest and most beautiful day in my life.

Everything from that day is still such a blur to me though, I don't know if its because of the medications I was on or just my mind trying to ease the pain. Either way, it hurts every minute of every day. I miss him so much and I miss who I was before we began this journey. Although this journey is not the one that I would have chosen for myself, I know I am not alone as I walk this path.