Meet the Founders: Annie Culley
I started having symptoms around Valentine’s Day 2012. I had periodical episodes of blindness and eye flashes. I consulted with my Optometrist and he thought that I was maybe having blood clots caused by the birth control I was on. So off I went to my reproductive specialist. He pulled me off of the pills until I was able to finish all of the tests to determine what was wrong. I got progressively more and more sick. My blood pressure went through the roof; I had numbness and tingling in my limbs, horrible headaches, muscle twitches, shortness of breath, aches and just felt totally miserable. I saw a total of 6 doctors; they did MS, ALS and stroke/clot work ups; they did 6 MRI’s and $3,000.00 worth of blood work ups and NO ONE could tell me what was wrong!
On May 24th I got my kids out of bed and we were doing our morning routine. They were sitting on my lap and their breath hit my nose and I had to run throw up. I was like holy crap, I think I’m pregnant! I was totally shocked and elated because it had previously taken us 5 years and IVF to get our twins! On June 8th I went for my 8 week appointment. As I was leaving a nurse came in with a vial and asked if I was willing to give a sample for an investigational study they were doing for Cytomegalovirus or CMV. I had never heard of CMV. She gave me a pamphlet about it, I thought nothing of it, shoved it in my purse, and off I went for the blood draw.
A few days later my Doctor called me and said that I was their first CMV positive patient for this investigational study. I can still hear his exact words, “Your blood work came back positive for a primary infection of CMV. There is nothing to be worried about, however, there is a small chance the baby can contract it.” I explained to him that I had been very sick since February and asked him if CMV could be the cause. He said that most people don’t even know they are sick with CMV and that I should not worry.
On June 15th I went into the University of Utah Hospital and met with the CMV study team. After going through the scary effects that CMV can have on a baby with the team, combined with all of the research I did prior to the meeting, I decided to join their study. The study consisted of getting monthly infusions of Cytogam, a hyper immune globulin drug, or a placebo for the duration of my pregnancy.
I went in every 4 weeks for an ultrasound and appointment with my doctor nothing seemed out of the ordinary until my 20 week ultrasound on August 31. I will never forget the words. “Your baby is very sick and may not make it to delivery. It looks as though your baby contracted CMV.” I was devastated! My doctor gave me the option of terminating the pregnancy and I refused. The Doctor recommended that I do an amniocentesis to verify that CMV was indeed causing the problems for my baby. I did it that day and left the hospital knowing that delivering a healthy baby was probably not going to happen. The next ultrasound was done on September 11th at 22 weeks. Everything seemed to be better. I felt relief and I truly thought that she was getting better. I left that day believing that I could carry this baby girl until she was big enough to deliver.
I returned to the hospital to do my 24 week ultrasound. On September 25th there was no heartbeat. My worst nightmare became a reality. My baby would not come home with me. I can honestly say that it was the worst day of my life. Everything that I had done to protect my baby girl did not work. Early in the morning on September 26th I delivered a tiny yet perfect little angel. We named her Oaklee Rae Culley.
I want to do everything in my power to help other women not have to go through the pain that I have been through. I feel like the only thing that I can do at this point is to spread awareness of CMV. Nothing is going to change the outcome of my pregnancy, however, the more people I can get the message to about CMV, I may be able to change the outcome of someone else’s pregnancy.
Losing Oaklee is the hardest thing I have been through in my life. I found that the best way for me to cope and heal was to tell the world about CMV. Every time I share my knowledge about CMV I feel better. I started healing by getting involved when a bill (HB0081) sponsored by Rep. Ronda Menlove, moved through the Utah state legislature. I was able to give my testimony to the House of Representatives and the Senate. I educated legislators of the importance of CMV education and newborn testing. I watched as Utah passed the first CMV bill and was able to stand behind the Governor as he signed the bill into a law.
After the law was in place, I realized that my work was not finished. Sara Doutre and I had a meeting and decided that we needed to get out in our communities and share our knowledge. It was this day that we founded the Utah CMV Council. We have since been busy in Utah. Abigail Wright, another Utah CMV mom, joined our team with her and Sara’s help we were able to bring on a great team that has made a huge impact in the state of Utah. We have worked hand-in-hand with the Utah Department of Health distributing educational materials throughout the state. We have had an amazing advisory board and a strong working board. Both Sara and I were able to present at the Utah CMV Policy conference in September of 2013 and the Utah CMV Council hosted a luncheon for all of the CMV families that attended from across the globe. We worked together with other CMV non-profits from all around the world to launch a silver ribbon campaign for CMV awareness. We have attended Health fairs, Community and Church meetings, Doctor offices, Early Childhood Providers and we hosted the first End CMV Silence Gala at the Utah State Capitol in Salt Lake City, Utah. We not only raised funds to start an advertising campaign, we also educated all who attended about the devastating effects of CMV. We had over 200 attendee’s for the black-tie event that walked away with knowledge about CMV that they did not have before, as well as willingness to support this important cause.
I am excited to see more and more talk, education and awareness spreading throughout the country. It is only a matter of time before CMV will be on the minds of every person and it is my hope by 2045 CMV will be eradicated from the world.
Category: Community, "Parent Perspective"