Born May 26, 2011
Became an Angel baby July 3, 2011
In September 2010, after being told numerous times that the chances of me being able to conceive a child and give birth were slim to none due to some medical problems, I had a positive pregnancy test. I was overwhelmed with joy and excitement as was my, at that time, fiancé. My pregnancy was very normal and healthy. We had the first trimester testing done and it came back 2% chance that the baby would have down syndrome, and that was not a problem, I just began educating myself on what to expect if that were the case. When I found out I was going to be having a girl, I can’t even describe the feeling of happiness, that’s all I had ever wanted was a little girl!
At 34 weeks I get a call from my midwife telling me that they didn’t have a good ultrasound picture of her heart. My mother and I went up north and I got a level two ultrasound done. The findings were devastating and left me confused with lots of questions. I had to go see a pediatric cardiologist who put everything into a better perspective. She would need open heart surgery at about 3 months old due to an AVSD (atrial ventricle septal defect). However, he said that hers was very peculiar in the way that it was very very minor and he had never seen one that looked so easy to repair. As scary as it seemed, I left feeling confident that this doctor would be more than capable of helping my little girl.
Due to the recent findings and her breach positioning I was scheduled for a C-Section at 11:00 AM on the happiest day of my life May 26, 2011. I will always remember the wait before the delivery, and how I couldn’t wait to meet my little girl!
She came out with a low body temp, slightly blue due to shallow breathing, but healthy and beautiful. She spent the first night in the NICU, as we did as well. I just wanted to hold my little girl that I had waited so patiently for. The next day she was brought down to the floor to be with me and we left the hospital and headed home a week later.
Everything was just so perfect! Granted we had to go up to the doctors to get her heart checked out every other week to ensure she wasn’t going to start having symptoms. Her weekly well baby checkups were going really well, her weight gain was a little slow, but that’s normal with babies that have down syndrome, we already knew that. Surgery was to be scheduled the end of September and we had started her on a few medications for her heart to help with blood flow etc.
I started back to work around the end of June. We were running low on funds so I worked a couple of days a week. July 2nd was a busy day at work and I stayed after with my brother, my fiancé’s brother and his daughter and chatted for a minute about the day and then the next. My fiancé and his son and Navia were all at home and watching a movie in bed, after spending a long day at a friend’s pool. I dropped my brother off at home and ran in real quick to get my birthday gift. I rushed in and out because I missed my baby and I wanted to get home to snuggle with her. Upon arriving home I went about my nightly routine before going to bed and even changed out of my smelly and dirty work clothes ( I work in a seafood restaurant) because I didn’t want her to get anything on her.
This is when my nightmare began. The nightmare that I still re-live every single day. I walked over to the bed and I couldn’t see her face… her head was turned into my fiancé’s arm… I began screaming NO PLEASE GOD NO. My fiancé and his son were sound asleep… I pulled her out and held her to see if she was breathing. Nothing. I laid her on the floor turned the light on and preceded to call 911 and wake my fiancé up and began CPR on my daughter all at the same time. I couldn’t believe this was really happening… I must be sleeping this must be a horrible nightmare. I was sick to my stomach with horror and complete heartbreak… My “save my child” mode switched on completely and I gave her CPR until the paramedics came. I was then driven to the hospital by a police officer. They had revived her! “She has a heart rate and its beating on its own and she is breathing on her own faintly” They told me as I walked into the ER Room. I was somewhat relieved and hopeful. She’s so strong and tough, I told myself. We took both of our first helicopter rides to the hospital where she was born because they have the PICU up there and doctors that know what to do to help her. She did great on the ride up, they kept me updated through the headset the entire way.
Once we got there it seemed like an eternity until we were allowed in the room to see her… She was all hooked up to machines, respirators, cardiac monitors giant IVs in her legs and arms…yet she still looked so perfect. They said things looked good.. her heart rate was fast but good and that in the morning they would do a brain function test to assess her brain damage.
I didn’t get a wink of sleep. The doctor came in the morning and a couple of them did a brain function test with us in the room with her. It came back negative. He told us that only her brain stem was functioning and she would never recover. At this point she was only gasping on her own, she wasn’t breathing regular breaths. He told me that she would only live for another maybe 24 hours in this state before she suffered a complete brain death. This left us with a decision. Take her off life support so we know we can be there with her when she goes or chance it and maybe we aren’t there for a split second and she would be gone.
We changed her into a pretty white dress and had her baptized with all the family in the room.. I gave her a little hair cut and we did a hand imprint, i just pretended this was normal behavior and nothing was wrong… then the decision time came…they took off all the leads and we laid down with her. I sang her all her favorite songs that would put her to sleep at night and read her the book that we used to read every night together. The hour that we laid and held her seemed to be the shortest hour of my life. She took her last breath and I knew it would be her last, I could just tell… and with my hand on her chest, I felt her heart slowly become more and more faint.. and then it happened, she was gone… I remember letting out a loud, painful cry. I couldn’t leave her side after that.. I just wanted to stay and pretend everything was fine. Why did this have to happen??? My little girl, the one that I’ve been always wanting is gone forever! NOTHING prepares you for this… no one talks about this happening… my little 39 day old baby girl, my new best friend and the love of my life… and there was nothing I could do to get her back… It seems like yesterday and forever ago all at the same time. It’s so confusing… Yet somehow I keep on going. And I know she is with me everyday helping me to laugh and smile and be happy…
You can contact Bethany at firstname.lastname@example.org.