MRKH – The Four Letters That Changed My Life

MRKH. These four letters changed the future of our family within minutes one year ago today.

May of 2018 started like any other. The school year was wrapping up and vacations were being planned. When a doctor appointment came up for our oldest, it was just another routine day of running here, there, and everywhere. When we entered the doctor’s office, I never imagined that within a few days, my world would come to a screeching halt.

Maddie developed super early compared to others in her age group; every year, we would go to her annual checkup and her pediatrician would ask if she had started her first period. The first couple of years of answering “not yet” were no big deal. We’d keep hearing “Anytime now”, but by her 13th birthday “anytime” still hadn’t come. For many, that doesn’t sound like a big deal. Yes, lots of girls don’t start until their mid-to-late teens. However, from a medical perspective, the majority of young women will have their first menstrual cycle within two years of their breasts developing. By these expectations, at 13, I should have been buying her pads for a few years. The pediatrician decided it would be a good idea for her to be seen by a pediatric gynecologist just to make sure everything was a-ok, and I agreed. 

So there we were at the first appointment and it was more awkward than either of us imagined. It started out with the doctor talking about female anatomy. Yes, photos were involved. No, I don’t know whose face turned the deepest red. After a basic fully-clothed exam, it was determined that a simple internal exam needed to happen. While I was in full “Holy cow, is this really necessary?” mode, the doctor put both of us at ease. She was so kind and gentle in her words. She explained step by step to both of us what was going to happen. Maddie chose for me to stay in the room, but behind the curtain. Done and done. During the exam, I was in a complete fog. I heard the things that were being said, but I never processed them to mean much. That’s until the doctor said, “We need to schedule an ultrasound as soon as possible”. My heart skipped a beat…or two.

Two insanely long days passed before we were back in the office for the ultrasound. Every negative scenario I could think of ran through my head during those days. We checked in, went into the ultrasound room, and waited. Maddie was focused on the fact that she drank several bottles of water and just wanted to use the restroom. I had never once let her know how scared I was. The ultrasound started, and moments later the doctor came in the room. She sat with us and asked the tech to check kidneys, ovaries, etc. She stepped out for a minute and brought another doctor in with her. Once again, I was in a complete and total fog with my heart racing…I’m sure everyone in the room could hear it pounding in my chest. The ultrasound finished, Maddie ran to the restroom, the doctors and tech stepped out, and then we were taken into a small office.

The next 30 minutes passed so slowly with Maddie sitting next to me and the doctor sitting across the desk from us. This is the moment that four letters forever changed our lives. MRKH. Maddie has a birth defect called Mayer-Rokitansky-Küster-Hauser Syndrome. My life stalled in that moment as I listened to the doctor explain the road ahead.

What is MRKH? MRKH has been the thing that has rendered me helpless. The thing that dropped me to my knees in hysterical sobs the moment I told my husband. MRKH is a genetic birth defect that affects roughly 1 in 5,000 women. My precious daughter is one of those young women. Maddie is Type 1 – no uterus. You can read the hardcore details here, if you choose. In this mama’s terms? In that moment, it meant my sweet girl will never carry children of her own. It means that I have to have even more difficult “sex talks” with my teen, because her vagina never fully formed. It means that at the age of 13, my girl sat next to me facing a doctor who just told her that she would never get her period. For many women, that seems like a blessing, but that is most definitely not the reaction of a teen girl who wants nothing more than to have that “rite of passage” like her friends.  

Until today, a very select number of people have known about this part of our life story. It has been a bumpy road that I have struggled down. I have wrestled with all of the “whys”. Why us? Why her? I still don’t have those answers and have accepted that I never will.  We have talked to Maddie extensively about sharing her story and she is not ashamed. We’ve chosen to empower her…to remind her daily that there is a purpose and we will help her find it. Through the Beautiful You MRKH Foundation, we have found a world of support surrounding women of all ages with MRKH along with the family members who love them. These women, young and old, are MRKH Warriors.

We have also found hope in the medical community through research and uplifting news articles. Did you know that there are successful uterus transplants happening in our world? Babies are being born because women who have passed are donating their organs – including their uterus! Women who have had the pleasure of birthing their own children are deciding to donate their uteruses to women with MRKH and other infertility challenges. This gives us hope that if this is what Maddie chooses, it may be an option for her someday, along with adoption and surrogacy. 

While I know that there are options for Maddie in the future, I struggle with knowing how to handle the mountain of struggles and emotions that will come her way when she’s older. I wrestle with knowing that I can’t fix it for her. Infertility is a heartbreaking battle that so many struggle with. MRKH is one type that I had never heard of until that day in the doctor’s office. The day when four letters changed my life.