Overcoming Her Diagnosis: Anorectal Malformation and Cloaca - Cincinnati Children's Blog

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.

If you have questions, or would like to request an appointment, please contact our Colorectal Center.

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

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Chelsea Mullins

About the Author: Chelsea Mullins

After 29 years of living with cloaca and ARM, the condition has helped shape and mold the woman Chelsea Mullins is today. She is blessed to be a wife, a mother to a vivacious 2-year-old little girl and nurse at a Reproductive Endocrinology & Infertility Clinic. She's thankful for the abundance of support from her family and friends and knows that she wouldn’t have made it to this point in her life without them.

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Comments

  1. Dawn October 14, 01:19
    Is there a way I can email the author directly? My young daughter has the same condition and I would like to ask some questions on how to help her develop the "overcome" attitude and just how to help her as she grows up with this condition. Thank you.
    • Chelsea Mullins Author October 14, 11:49
      I would be happy to speak with you. I will send you an email directly so that we can connect!
      • Lady BB May 24, 09:23
        Hi my daughter was born with a cloaca and her surgery is coming up in June am so scared and don't know what the future holds for us. Please can we get in touch do I could ask some questions.reading your story gives me hope but still I cry every time for my 3monrhs old daughter.
        • Rachel Camper
          Rachel Camper May 27, 08:32
          Hi Lady BB, She would be happy to speak with you. I'll send you an email with her contact info.
  2. Vicki October 14, 21:25
    Chelsea, Thank you for sharing your story, and congratulations on your beautiful daughter. She is lucky to have you as a mother. My daughter is 5 years old and has Currarino Triad Syndrome. So many challenges you both have are simply unfair and no fun, but make you strong, resiliant, and extremely adaptable. I hope that I can find you in 5-10 years when she starts asking questions I can't answer. At the very least I will keep your story for her to show her that she can find a way to accomplish her dreams. Vicki
    • Christal Nash December 18, 12:04
      My daughter who just had her 8th birthday also has currarino's triad. We are going to Cincinnati this month to see dr. Pena and I'm very grateful to have found and read this story. I look forward to sharing it with my daughter and hope it gives her add much hope and inspiration add our had given me. I would love to talk to other mothers add week dealing with Currarino's, Vicky. Please look me up on fb fb.com/christalnash
  3. S.mum January 28, 16:45
    Dear Chelsea! thank you so much for sharing your story. what an inspiration you are! thank you. being a mum of cloaca baby i try to live my life day to day but every now and then i do think about her far future. your words gave me comfort - reassurance - she will be happy, fulfilled woman one day. THANK YOU! P.S. can I share your story on my blog? please? www.cloaca.eu
    • Rachel Camper
      Rachel Camper January 30, 08:39
      Hi S.Mum, I reached out to Chelsea and she would be honored for you to share her story on your blog. Many thanks for helping us spread her story!
      • S.mum November 04, 08:34
        I shared Chelsea story. Thank you for letting me here is link http://www.cloaca.eu/overcoming-her-diagnosis/
  4. rachel wilson February 23, 11:53
    Chelsea, I thank you for your openness and discussing your feelings of anger and feeling isolated. My daughter has the same diagnosis as you and she is feeling alone in her battle. She was seen on the playground when she was upside down on the monkey bars with a diaper on. The kids laughed of course as she was in kindergarten. I have sought professional help for her and I feel if she could talk to you it would be so encouraging to her. She is now in first grade but that day has been so traumatizing to her. She deals daily with kids asking if she is in diapers and now she wears poise pads in her panties. I have spoken with the principal and guidance counselor but I think she would value your advice.
    • Rachel Camper
      Rachel Camper February 24, 13:26
      Hi Rachel, I reached out to Chelsea and she said she would be happy to speak with your daughter. I will send you an email directly with her contact information.
  5. lexi pooh May 07, 15:09
    hi my name is Alexis Baggett and i was born with the same thing and also have a colostomy bag. i will be having it removed may 16th 2016 im also in foster care from the age of 10. i hope everything goes well in your life as i can see it is going well. i cant wait until my life is perfect ... again.i will be back with my family soon in September 2016.
  6. Liz May 08, 15:09
    I would also like to email the author. My daughter was born with cloaca, imperforate anus. Duplex vagina and hydronephrosis. She is now 5. Life was so hard and I thought there would never be a light at the end of the tunnel. Things are stable now but she is enema dependent and I worry every single day what her future will be like. I already know at 5 years old she feels different and it breaks my heart. Was just hoping for some feedback on how to handle certain situations
    • Rachel Camper
      Rachel Camper May 10, 08:22
      Hi Liz, Chelsea would be happy to speak with you! I will send you an email with her contact information.
  7. Oklahoma RN August 08, 23:08
    Chelsea, thank you so much for your honest post. My 7 year old had the Peña procedure done in Cincinnati at the age of 2.5 years. As a labor and delivery RN, I've encountered only 1 patient who has had a colorectal malformation. I often wonder about my beautiful daughter's future, but I am so thankful that we found the help we needed at the Cincinnati Children's Hospital. Everyone there who helped along the way was beyond amazing. God bless you & your family, Chelsea.
  8. Kimmer February 08, 18:32
    Hi, my name is Kim, I'm so greatful that I came across this article. I am 41 years old, and was born with a cloacal malformation and a imperforated anus. I would be happy to share my experience with anyone who has questions. I have had an ileostomy for 25 years and would love to share my experience with anyone who is facing ostomy surgery. You can contact me by email at rainbowlove1975@gmail.com.