Thursday, September 3, 2015

On Uterine Transplants and Grandmothers....

The new science of uterine transplants is wonderful.  How exciting that a woman who once could not carry a child within her own body, now can.  Equally uplifting are the stories about aging mothers who open their womb to carry their own grandchild.  It is satisfying to read that women who want children, but whose own bodies will not allow this, are finding ways to have children that are biologically theirs.  I am glad for mother's who are excited about these options for their daughters with MRKH...granted their daughters are also excited about these options.

Yet, a nagging thought lingers in the back of my mind whenever I read about a uterine transplant success story, or about a mother who carries her daughter's child.  While my daughter is only 15, I am pretty certain that she will not be one of the women with MRKH who opts to have a donated uterus transplanted into her body, or asks me or anyone else to carry a child for her.  And, that is okay.  She doesn't have to.  My daughter has always expressed a desire to adopt children that are difficult to find adopting parents for...not just a baby, but toddlers and older children, too.  I do not think that this aspect of my daughter's belief system and desire for her life's outcome is going to change.

Furthermore, I am pretty certain that I could never agree to carry my daughter's child in my body; not only do I believe that my age would negatively impact this experience, but I also really have no desire to carry anymore children in my tired uterus.  I have been pregnant at least seven times, with 3 live births, 1 stillbirth, and 3 premature ends to a pregnancy.  My live births, and the stillborn, were long, tedious, dramatic, and painful processes.  It is okay that I do not want to give birth to anymore children; it is okay that I really do not want to do this for my daughter (she has never asked, and likely never will).  It doesn't mean I love my daughter less than a woman who would do this for her daughter.  My daughter and I did have a conversation about this topic, and while she thought it was sweet that a mother would do this for her daughter, she expressed concern about the mother's age and the issues that could arise, for mother and grandchild alike, during such a pregnancy. I also have to point out that even if I did not have my personal (and often horrific) experiences with birth, not wanting to carry my daughter's child does not banish me to the "bad mothers" bench.  It simply means that I have no desire to do this...nothing more.

A woman is not made complete by the existence of a uterus in her body; nor is a woman made complete by birthing a child out of her own body.  A mother's love is not measured by whether or not this mother would carry her daughter's child.  I believe the nagging thoughts that linger in the back of my mind when I read uplifting stories about uterine transplants and grandmothers carrying their grandchildren in their womb are comprised of thoughts about what makes a woman a "real woman" and what makes a mother a "loving mother."  If my daughter does not want to carry a child in her body, and she may never want this for herself, it makes her no less a "real woman" than women who would climb the highest mountain to give birth to a biological child. Additionally, if I do not want to ever carry another child in my body...grandchild or otherwise...this does not render me heartless, nor does it mean that I would not move mountains for my daughter.

Sunday, August 2, 2015

"Love You...See You Never"

It has been just over two weeks since my daughter's diagnosis.  It seems like longer.  It seems like minutes.  I find myself wanting to not make a big deal out of my daughter having MRKH...telling myself to stop being so dramatic, stop being overly emotional, stop thinking about it so much, stop bothering friends with my feelings, stop crying randomly.  Something happened the day she was formally diagnosed; a strange disruption to innocence occurred...her innocence, my innocence, life's innocence.  I have had plenty of trauma in my lifetime, so it is not like I am some kind of Pollyanna whose bubble just burst...I lost my father when I was very young, my mother suffered (suffers) from mental illness, I struggled with addiction, numerous tumultuous relationships, break-ups, make-ups, a stillborn baby...I am not innocent of the pain and suffering of life.  Yet, my daughter being diagnosed with MRKH has seemed to disrupt innocence in a way that I cannot quite daughter's life has been forever changed, and this has changed my life forever, too.  Maybe someday the words will come that will allow me to explain to myself, to others, how this diagnosis interrupted and disrupted our life and the innocence that has enveloped it.

Tonight my daughter is staying overnight at a friend's house.  As she left with her friend, she laughed over her shoulder, "Love you, see you never."  She has said this before, and it has never struck me as anything but my sassy, wonderful daughter being herself; however, today when she said it, I felt a pain in the pit of my stomach, and wanted her to never say it again.  Something has changed.  The reality of mortality, maybe?  I suppose that having one of my children diagnosed with a rare syndrome that I cannot fix might made me face the reality of my mortality, of my children's mortality.  I am not sure, all I know is that the thought of never seeing my daughter again makes my stomach ache in the same way that it has often ached when I have missed my dad...only worse, much worse.

To distract myself from the feelings that her comment brought up, I busied myself with housework.  I cleaned my bedroom, organizing dresser drawers that were desperate for attention.  Then, I decided to change my daughter's bedding, seeing how I had the chance because she was away for the night.  After I pulled the sheets and blankets from the bed and put them in the washing machine, I went back into her room to pick up some trash that had been pushed under the bed...Starburst wrappers and other small things.  I spent the next two hours cleaning her room...something I have not done for her since she was in grade school.  There was something healing about cleaning her room. I felt close to her; I felt like I was taking care of her;  I felt that with every dust bunny I was chasing away, I was giving her a hug; I was protecting her.  It occurred to me that cleaning my daughter's room, like I did when she was little, restored some of the innocence that seemed to have disappeared the day my daughter was diagnosed.

In my core, when I move past the fear that the disruption of innocence brings, I know that all will be well.  I have seen innocence interrupted before, and I am sure I will see it again.  However, I have also seen innocence and wonder and happiness restored...even after some of the most traumatic disruptions of innocence.  I saw it restored tonight as I straightened my daughter's pictures and made her bed with fresh linens...I knew that everything was going to be okay as I placed her stuffed pink bunny next to her pillow.

Monday, July 27, 2015

A Rough Day

I have noticed bursts of sadness and bursts of anger in the past twenty-four hours.  I am pretty sure it is due to the out of control feelings that are often a part of the process of acceptance.

I received an email from my daughter's gynecologist late yesterday, informing me that she was trying to get a referral to a specialist approved, but believed that my insurance would most likely want my daughter to see a doctor at the university hospital close to my home...there is no specialist there, and when I called the hospital today to find out who she would be referred to, I had to explain what MRKH was, I had to explain what Mullerian Anomaly was.  I am feeling some very strong emotions about not wanting to do this...not wanting this to be our reality.  I am sure that this is part of the process of acceptance, but I really have never done well with this part of the acceptance process.  I don't like to feel out of control, and I really feel this when I think about insurance companies and having to drag my daughter from one doctor to the next...why would we have to do this when we have the diagnosis and there are only a handful of doctors who treat MRKH.  (I also hear a tiny voice saying, deep inside myself, "I don't want my daughter to have MRKH...I love her, but I don't want this to be real.")

Tomorrow is another day.  I will call the insurance company and tell them that it is a waste of resources to send us for a second will be the same as the first opinion...and then we will need a referral to a doctor who treats, let's skip the nonsense and just get right to the doctor who I will not have to explain MRKH to.

I wonder what I will do about that tiny voice I have been hearing.  I  wonder how to come to terms with that.

Saturday, July 25, 2015

Catch and Stop

My daughter was only diagnosed a little over a week ago; although I had suspected MRKH since June 25th when she was supposed to have an hymenectomy.  Her gynecologist was unable to complete the hymenectomy because of what she found when she started the procedure.  The doctor had started to cut into what appeared to be a vaginal septum, and then realized that it was something more, and ordered an inter-op ultrasound, and the radiologist stated that it looked like a Mullerian Anomaly.  So, the doctor put in a few stitches in the place that she had cut, and stopped the procedure, and came and spoke to me.  She told me that she is not sure what was behind the septum, and wanted to order an MRI to find out.

We went home, and my daughter slept in the bed with me for nearly a week as she recovered.  During this time, we watched a lot of horror movies...not my thing, but she loves them...and spent a lot of time together.  It was not until almost a week later, once my daughter went back to her own room and had her best friends over for the weekend, that I googled "Mullerian Anomaly," and started doing some research on what this might mean for my daughter.  I suspected MRKH pretty quickly after reading about it on the Beautiful You MRKH website.  I also started to hover around my daughter quite a bit, and she did not care too much for my hovering.  After my daughter's MRI, the diagnosis of MRKH was made, and I told my daughter that she had MRKH Syndrome.  And, I kept hovering.  And, my daughter kept being annoyed.

Thankfully, I have some really close friends who are more like sisters to me, and I was talking with a one of them on the phone one night, and told her that I was pretty much stalking my daughter...making up excuses to go into her room to talk to her, asking her how she felt (a lot), and basically being a real nuisance.  My friend, who is a social worker who works with CPS, suggested that I do a daily 5 minute check in with my daughter, instead of hovering and/or stalking.  I suggested this to my daughter, and she thought it was a much better idea than me constantly stalking her, and asking her if she was okay...or even more bothersome to her, not asking her anything at all, but just staring at her, looking for signs of distress.

We started doing the daily check ins and it has relieved a lot of stress...probably for both of us.

This is how a check in usually looks:

We stand facing each other.  I put my hands on her shoulders, and we look into each others eyes.

Me: Are you okay?
Her: Yes.
Me: Do you need to talk about anything?
Her: Not really.
Me: Are you sure?
Her: Yes, I will let you know if I do.
Me:  Look into my eyes, and tell me.
Her:  (Laughing) I am, Mom.  I am okay.
Me:  I love your face.
Her: I love yours, too.

The conversation varies from day to day, and it is usually pretty playful.  The key part is that I touch her, and I look into her eyes, and she looks into mine.  I feel better, and I suspect that she feels freer.

Like I have said in an earlier post, I have no idea what it is like to be her; nor do I know what it is like to be diagnosed with MRKH.  I really want to honor her space to experience this as she is meant to...with minimal outside influence from me regarding how she is supposed to feel, act, and be.  I have to catch and stop myself from pushing her to talk.  I have to catch and stop myself from pushing her to experience life the way I want her to...without any suffering or sadness.  I have to catch and stop myself from trying to fix this...put a band-aid on it...hug and kiss it away...this is not something that I can take from her, no matter how much I wish I could.  Having MRKH is HER experience, and I have to catch and stop myself from wanting to take it from her so she doesn't feel any hurt, sadness, suffering or pain.  I have to catch and stop myself from doing these things because, honestly, I think my interference will only cause the things I am hoping to protect her from.

This daily check in that we are doing helps me catch and stop myself.  If I find myself really struggling to catch and stop myself, I call a close friend, or chat with a fellow mom in the support group for mothers who have daughters with MRKH.  My daughter has enough on her plate, she does not need my interference heaping on more.

What is MRKH?

MRKH, or Mayer-Rokitansky-Kuster-Hauser Syndrome, is a something a girl is born with.  I am so new to this, that I cannot pretend to understand how it happens...but, it happens while a female fetus is developing in the womb.

It is also known as:
  • congenital absence of the uterus and vagina (CAUV)
  • genital renal ear syndrome (GRES)
  • MRKH syndrome
  • Mullerian agenesis
  • Mullerian aplasia
  • Mullerian dysgenesis
  • Rokitansky syndrome
One in approximately 5,000 females are born with this syndrome.  From what I understand, most are not diagnosed until they are in their teenage years.  Many of the stories I have read about include a trip to the family doctor, or a gynecologist, because the teenage girl has not begun to menstruate.  This is what happened with my daughter.

What I know to be true about MRKH is that it does NOT mean that a girl, or woman, with this syndrome is not female.  Girls with MRKH are 100% female, they have two X chromosomes, and most, by the time they are diagnosed, have gone through normal cycles of puberty (growing breasts and pubic hair, ovulation). My daughter has two healthy ovaries, and has the outward signs of being female.  It is not until her gynecologist examined her that it was discovered that she did not have an inner vagina or a uterus.

Some women with MRKH have other issues associated with the syndrome that include kidney problems, heart defects, and spine issues.  An ultra-sound last week shows that my daughter has both kidneys, and that they appear healthy.  As far as the heart defect and spine issues go, we are not sure and will probably have to see a specialist to rule out these issues.  However, I am hopeful that these things will not be an issue for her because she has been a very healthy girl for her 15 years, so far.

I had personally never heard of it prior to being told by my daughter's gynecologist, after a failed hymenectomy procedure, that my daughter had what appeared to be a vaginal septum, possibly a Mullerian anomaly.  I studied Women's Studies a couple of years ago at a local university, and do not recall ever hearing of MRKH...too bad I didn't know what was in store for my family because I might have researched MRKH for my senior project.

*some of the information above was found at:  A lot of the information that I have at this moment comes from internet searches, which include a website called Beautiful You MRKH and Facebook groups created to raise awareness of this syndrome and provide support for women/girls with MRKH and their families.

Introduction: My daughter has MRKH...

My daughter was recently diagnosed with MRKH.  While the experience of having MRKH is hers alone, and I would never presume to know what it is like to be diagnosed with MRKH, nor would I ever want to take anything away from her by sharing my experience; the journey of being a mother to a daughter with MRKH is mine, and it is unique to 1 in approximately 5,000 is an important journey, and it needs a voice.  

I am hoping that this blog will document the experiences of one MRKH mother in such a way that it informs, inspires, and comforts the other mothers out there who also have daughters diagnosed with MRKH.

Because MRKH is such a personal diagnosis and journey, I am not using my real name because I do not want to violate my daughter's privacy...some of you reading will know who we are, because I opted to share my identity with you; however, most of you will just have to do your best understand why I have opted to use a pseudo-name