Hello and We Need Perspective

[MyLittleGirl]

Hello, and by way of FULL DISCLOSURE, I am the 39 year old father of a two year old who was diagnosed at age 3 days with MRKH. I have researched MRKH as best as possible, but I still don't feel I understand much about this complex condition. I have encouraged my wife to do the same, as well as engage in discussions here and through other means, but this is not something she wants to come to grips with. So, time has rapidly passed in two years, and we are still where we were when our girl was a baby. I don't expect to have taken action, but I don't even think we have advanced our knowledge or perspective since the initial shock.

We need perspective and advice, and the only people I have access to are two male doctors: one an industry-leading but uncommunicative male who leads in colovaginoplasty and another man who is a OB-GYN surgeon (?). We have gotten conflicting advice, and we have no persective. The first suggests the procedure by age 3 since the trauma of surgery will be lessened. The other suggests waiting as surgical practices and medicine continue to improve rapidly, and waiting might open options. In my daughter's case, neither thinks dilation is a viable option.

While these suggestions are action-oriented, no one really talks through the psychological implications in a way I think is informed or credible. Will anyone open a dialogue with me on this? If not me, perhaps I can cajole my wife to engage in a dialogue if she knows a real person can email/aim with her.

Thank you, and I apologize if my involvement on this Board creates a sense of privacy invasion for anyone.

[Betsy]

Hi Dad,

First off...welcome to Bodies Like Ours. I apologize that you seemed to slip in under my radar and you never got an official welcome! So, here it is :p

Everyone is welcome here, and it is good to see a Dad's exploring all options for their lil one. In fact it is even refreshing.

Anyways, I wanted to let you know about a resource you may find helpful. The Magic Foundation has a division called GRAC which stands for Genital and Reproductive Anomolies in Children. It's headed up by a woman named Ellen who is also the mom of a daughter with MRKH. You can find them on the web at http://www.magicfoundation.org/divisions/gra.htm There is a contact link there as well.

I hope this helps you some and please do get in touch with Ellen.

Betsy

[Trish]

I just joined this forum, and read your comments with great interest. Your posting was several months ago, so I'm not sure if you are still checking in here. On the chance that you are, I thought I'd write. I am 52 years old (living a good life, I might add), have mrkh, and would be more than willing to share my thoughts and experiences with you.
My initial reaction (based only on my own experience) is that there is no need to rush into action. We, unfortunately live in a culture that gets very anxious about genital anolmalies in particular, and there's a lot of pressure to make it go away. The physical differences themselves do not necessarily present insurmountable problems, but the assumptions that they're socially intolerable can be quite hurtful. I know there are no easy or universal answers to your questions, but it is my belief that your daughter may know what is right for her to do, given time, information, and respect for her as a whole person. (It's hard to know what a particular set of circumstances will mean for her at this early point.)
I believe that your daughter is off to a good start with a father who is putting such effort into trying to figure out what's best. Since it can seem pretty scary and overwhelming early on, I can certainly understand your wife's positon as well.

With my best wishes,
Trish

[claraJane]

Hey Dad,

Just one word. Dilation.

I've had vaginoplasty twice. Once was colovaginoplasty. Yes, the surgeries can be traumatic. I'd still recommend that you wait until she is old enough to demand the surgery herself.

Here's why. If she has even a tiny dimple of a vaginal cavity she may be able to stretch it and avoid surgery altogether.

If surgery is necessary then the new cavity will have to be stretched on a regular basis or it will shrink. This is even true with colovaginoplasty, although the shrinkage is slower.

Dilation involves forceful insertion of a blunt plastic or rubber dilator. In order to be effective it must remain in place or be repeatedly pressed in.

How often one has to dilate depends on the tissue used and the individual. It ranges from daily to every couple of weeks.

Five years after my first surgery I got ill and had to leave the form out for two weeks. After just two weeks without dilation I had so much shrinkage that a second surgery was required.

Constant vaginal examinations by doctors tends to affect kids the same way that childhood sexual abuse does. What do you think it would do to your daughter for you to have to dilate her regularly until she is old enough to do it to herself?

Sorry if I'm ranting. But, I've run into parents who were pressured into allowing the surgery and not told about the necessity for dilation until after the fact.

I can also put you in touch with Dr Catherine Minto, a gynecologist who has examined hundreds of women who've had vaginoplasties. Her results indicate that the results are generally less than satisfactory. She recommends waiting until the child is a woman.

Mrs Jane Simon

[uriela]

Hey Dad,

To illustrate what Jane just wrote, please see this web
page:

http://www.intersexinitiative.org/articles/minto-creighton.html

[Betsy]

I have this entire study. Email me if you would like to read it. Betsy

[sfinkton]

It makes me so happy that a parent in your situation is actually willing to explore and discuss all options for your child, rather than immediately rushing to surgery. It really shows the progress that has been made.

I think the most important thing you can do for your daughter is to make sure she knows that she is loved and accepted by you no matter what. And, please, don't do anything permanent until she is able to be a part of the decision.

Best wishes,
Sarah

[Jaye]

We are posting a response on this site for the first time, so hope it works!! We are parents of a 15-month-old girl who has MRKH and MURCS. There is so much to know, and we are worn out by the investigation so far--just learned about the MRKH part about 3 weeks ago, though we suspected this might be the case based on other congenital problems she has. Thank goodness for the internet. Anyway, to the Dad that posted about his two-year-old daughter, are you still out there? We'd like to compare information and resources with you and your wife.

[Natasha (again)]

I wish that I could be of some real help. Yet all I
can do is offer my opinion. I imagine that you
are really very overwhelmed with many opinions
though.

What really comes from my heart about this is
the following.

It is not about other's opinions, needs, best
interests or sensibilities. It is about your
child's needs, opinion, best interest and
sensibilities.

She cannot speak for herself at this time. Be
certain that she will have plenty to say about
this later however, and for as long as you know
her if you take away her potential choice. Which
is one that she will be forced to live with for the
rest of 'her' life.

Anything that does not absolutely have to be
done, for the sake of her physical health right
now, should be put off until she is able to make
her own choice.

Medical professionals who insist that it is best to
operate before she turns age three, are merely
making an assumption based on supposition.

These same people refuse to hear those of us
who for years have been telling them, how such
surgeries have harmed us.

We are the horse's mouth on this, not them.

It seems a very straightforward decision to me.
Simply put. It is not yours to make.

Natasha