Overcoming Her Diagnosis: Anorectal Malformation and Cloaca
5 years ago my future mother-in-law said something to me that has stuck with me all of these years. It was a question that made me evaluate where I had been and how to have a better outlook on the condition I was born with: anorectal malformation (ARM) and cloaca.
She asked me a simple question:
Do you want to be known as someone who is defined by her diagnosis, or someone who has overcome it?
I chose to overcome it. I’m not saying that it was easy, because it most certainly was not. But I realized that the years of tormenting myself had done nothing to help me. The years of questions like, why me? What am I? Who am I? What do they think of me?
10 years of fighting with who I am and being angry that it happened to me didn’t help me move forward and consider who I wanted to be.
After some time had passed and a lot of self-reflection, I came to the realization that I wanted to help people by becoming a nurse. I wanted to eventually be a wife and mother.
So Dr. Bruce Tjaden, my reproductive endocrinologist at the Center for Reproductive Medicine in Wichita, Kansas, walked me through my gynecologic and obstetric options. I had been seen by Dr. Peña, the founding director of the Colorectal Center at Cincinnati Children’s, since I was four years old, where he performed multiple reconstructive surgeries to help correct the anorectal malformation and cloaca, which included multiple posterior sagittal anorectoplasties (PSARP).
Dr. Tjaden answered all of my questions from the medical perspective, like what sex will be like for me, what my chances are for conception and can I give birth to a baby?
In order to potentially fulfill those goals, he explained that my vaginal stenotic ring would need to be removed, due to the shortening of my vaginal canal. Because this procedure is not his area of expertise, he encouraged me to explore my options. I found Dr. Lesley Breech’s name on the Cincinnati Children’s website, and I set up a consultation with both Drs. Breech and Peña. We reviewed multiple options and completed testing.
When I was 25 years old, my husband (boyfriend at the time) and I decided that having a redo PSARP and vaginoplasty was the best option for me. This was a very extensive surgery where they took a piece of colon and elongated the vaginal canal to allow for sexual intercourse. Eventually when I was married and ready to have children, Dr. Breech walked me through my options for becoming a mother.
Because of multiple abdominal surgeries, pregnancy was not an option for me. But, using a surrogate might be. We tried in vitro fertilization (IVF) with a gestational carrier in April of 2012. My husband and I knew this was the only way we would have a biological child. One of my co-workers was extremely gracious and offered to carry. This started the process. We only did IVF once. Unfortunately, I did not respond well to the ovarian stimulation and was only successful in retrieving and fertilizing one embryo. We transferred that embryo back and found out a few weeks later that we did not become pregnant.
This was very difficult time. We questioned why? But then the picture became clearer. Adoption may be the answer in expanding our family.
We adopted a baby girl seven months later. The birth mom was absolutely amazing. She gave me as close to the childbirth experience as I could have. She allowed me to be in the labor and delivery room and I even held her leg while she was pushing. I got to cut the umbilical cord. And we left the hospital with a beautiful baby girl who has been the light of our lives.
I was also able to find a suitable, rewarding career path. I am an infertility nurse practicing with a Reproductive Endocrinology and Infertility Clinic. It has been incredibly therapeutic to help patients who are in similar situations as I was. There is comfort in camaraderie and it feels amazing helping someone’s dreams come true.
I’m sharing my story because I want other females out there to know that there is a light at the end of the tunnel. Regardless of your age, having an ARM and cloaca is challenging and can be isolating. But you don’t have to let it define you as a person. You can overcome this.
Seek professional counsel if you are feeling isolated, angry, or depressed. I wish I had done it sooner. I found journaling helpful to relieve some of the weight on my shoulders when I couldn’t speak with someone. I wrote a blog during our infertility process and made it public after. This allowed outpouring of support and other people bearing there difficult situations in creating their families. It created more friendships and confidants to help during those tough times.
Choose supportive friends and partners. I picked them carefully and was always cautious to whom I revealed my condition. My closest friends growing up threw parties for me each time I had a major surgery. I waited for a very long time – even a year – before I told my partners the full scope of my gynecologic situation. I’m not saying the length of time is right or wrong, what I am urging you to do is to consider what is important to you and stick with it. Privacy and finding an understanding partner were paramount to me.
Don’t be afraid to explore your gynecologic and obstetric options. Sit down with your OB/Gyn and outline what you hope to achieve and what is possible, based on your specific condition. While pregnancy wasn’t an option for me, it can be for many other females with cloaca. In fact, Dr. Breech told me that many young women with cloaca should be able to carry a baby. Reconstructive procedures may be necessary to make this happen, but it is possible.
Above all, please know that it can and will get better. Believe in yourself. You have overcome more than a lot of people will in a lifetime, already! Enjoy life. Sometimes, just letting go, will allow you to find a different part of who you are.
Editor’s note: If you’d like to learn more about gynecologic concerns in females born with anorectal malformations, Lesley Breech, MD and Debbie Morse, BSN, RN, CNP, hosted an online Q&A session and answered participants’ questions. Follow this link to watch it.
Photos were taken by Alison Moore Photography