Begin at the Beginning

Hello!

I suppose ought to introduce myself.  As the Red King said, "Begin at the beginning, and go on till you come to the end: then stop."  I'm a senior medical student going into Internal Medicine.  I'm happily married to a wonderful young man.   We are happily -- I try to convince my husband -- caring for a Siamese cat I wanted to name Bartonella or Pasteurella.  (Wasn't allowed.)  We have lots of family in the neighborhood and are a very close-knit group.

I also have Turner's Syndrome.  I'll spare you the detailed medical explanation.  What's relevant here is, I can't have children.

So I am starting this blog.  I hope it serves as a guide for other young women trying to make a baby.  Or at least a cure for readers' insomnia with no drug-drug interaction and no dosing adjustment needed in the elderly or renal patients.

At this point (you're seriously still reading?) I suppose I should fill you in on Operation Baby.

Operation Baby began soon after we were married.  We knew we needed an ovum donor, and that the process would take time.  We both wanted to start a family as soon as possible.  So December 2009, we met with my gynecologist, who is a reproductive endocrinology and infertility (REI) specialist, to discuss plans.  She told us I needed to get cleared by Cardiology and that I needed a high-risk OB.  January 2010 we met with a maternal-fetal-medicine (MFM) specialist who felt I was actually not high risk.  I went to see the cardiologist.  Normal cardiac exam, normal echocardiogram.  I went for my MRI/MRA to be certain that my aorta was not dilated.  Again, everything was fine.  It seemed I was at the low end of the high-risk group.  I found an OB on the faculty of my medical school.

Next step: document ovarian failure and make sure I have a normal uterus.  I take an OCP to replace the hormones that the ova I don't have don't make, so this meant a five-week drug holiday.  I will never look at menopause the same way now that I realize those horrible episodes I got upwards of twenty times a day were hot flashes.   But for those five weeks I pretended that there was a possibility I was one of the very few women with Turners and preserved fertility: prenatal vitamins just in case (no folic acid deficiency here!) and labetolol instead of fetal-kidney killing ramipril to treat my hypertension.  But that Friday in March an ultrasound demonstrated one streak ovary.  Not even two streaks.  I somehow maintained my composure enough to reassure the sympathetic ultrasound techs that this wasn't bad news; I'd be okay, and I was glad because the ultrasound demonstrated a normal uterus.  I met with my internist (who is also my wonderful mentor) the following Tuesday for the bloodwork results I knew were coming.   When she asked what I knew about the test outcomes, I couldn't help thinking that this was exactly the ask-tell-ask technique we had been taught to use to deliver bad news.  She reinforced the idea that fertility and motherhood were not the same.  I didn't cry.  In her office.

I won't describe my mood over the next several days.

Okay, but I had a normal uterus, so I could still carry a pregnancy.  Right?  I chose an OB and she recommended a different REI specialist.  A dear friend actually volunteered to be my ovum donor, and my husband and I accepted her generous offer.  It seemed things were moving along.  The May 2010 appointment with the REI specialist went well.

But then...REI specialist #2 attends a conference, where a national expert announces the previously mentioned guidelines now recommend against girls with Turner's carrying a pregnancy.  I learn this in June 2010, alone at a computer.

We are left with surrogacy or adoption.  My husband wants to chance to father a biological child, and I like the idea of sharing in the pregnancy vicariously, so we decide to pursue surrogacy.  I try to remind myself that our goal is a baby and not pregnancy.

Wait.  Surrogacy is illegal in my home state.  Apparently it's a crime to want a baby.  We live relatively close to the surrogacy-friendly Illinois, however.  We contact Alternative Reproductive Resources (ARR), a gestational surrogacy agency.  In August 2010 we celebrate our first anniversary by meeting with the psychologist for our psych screening.  She deems us sane, and we excitedly start trying to coordinate with my friend, our intended ovum donor.

Roadblock!  My friend is engaged.  Despite the fact that her wonderful fiance is completely supportive and has known about this for three years, FDA regulations apparently state that known donors must be either single or married at least one year.  That meant waiting at least another two years, and who knows what might happen?  And my friend is moving to another state.

But then came good news: ARR found us a potential surrogate, who was a surrogate for another couple before, and was known to be a sweetheart.  Now we just needed the genetics.

Fortunately, ARR also matches intended parents with ovum donors.  We had the strange experience of looking through profiles of possible donors.  It's almost like a Facebook on steroids: pictures, favorite books, hobbies, medical history...and then one day in October 2010 we got the call that our chosen donor was available!

We could barely wait until the meeting with our potential surrogate in December.  Once again, we drove to Illinois.  We had to meet another psychologist and he then facilitated the meeting with our potential surrogate and her husband.  The potential surrogate was indeed a sweetheart.  We knew instantly that we were willing to work with her, but the rules were that nobody could decide during the meeting.  We got the good news that evening and I was on cloud nine.

For about a week.

Turns out, the wonderful potential surrogate lives in a not-so-wonderful state, where obtaining parentage is problematic.  But there was some good news: ARR had already found us a second option, from a surrogate-friendly state.  We met her and her husband in January, this time far less excited, but after once again meeting with the psychologist (we're pretty good at it by now) and learning that this young woman was just as wonderful as the first, everything worked out.  The donor and the surrogate both went for their exams, and checked out healthy.  So far, so good...

Now we're in the contract phase.  We can't talk to our surrogate, and she can't talk to us, until the contract between us is signed.  The lawyers communicate with each other and we see the various drafts of the contract.  It's all pretty boilerplate since we have no special requests.  Tomorrow we go to Illinois again so that my husband can have his workup done, since they won't accept any labs or an exam from an outside facility.  If everything is okay, we'll sign the contract and then it's up to modern medicine and God to make us a baby (or two).

If you have continued on to this point -- seriously, you have nothing better to do? -- you may have actual logistical questions.

If you have Turner's Syndrome and insist on carrying a pregnancy yourself, PLEASE get a complete cardiac workup before you do so.  Learn the signs and symptoms of aortic dissection.  And remember, normal workup does NOT mean you are safe!

If you are pursuing gestational surrogacy:  We felt most comfortable using an agency since our REI specialist had recommended ARR and we figured it was our best bet that the surrogate would be reputable.  The agency sends you a copy of the intake questionnaire the surrogate filled out, with all sorts of background social and medical information.  All surrogates have at least one child of their own, have never had complications during pregnancy, and have a spouse or long-term partner.  When you meet them (and their significant other), the psychologist facilitates the meeting and goes through question about what led you to surrogacy and how you feel about abortion, selective reduction, multiples, etc.  That way you match with someone who is compatible.

If you also need an ovum donor, some agencies do both, and you may be able to get a discount.  But you will still end up paying upwards of one hundred thousand dollars between the agency fees, the medical bills, the surrogate's and donor's compensation, the lawyer fees, and the surrogate's maternity insurance.  Even if she has maternity insurance, it won't cover a surrogate pregnancy except in Wisconsin, which is not a usable state if you need an ovum donor.  And maternity insurance can cost thirty to forty thousand dollars.  (Small market, and most people pursuing surrogacy have money or are, like us, blessed with overly generous family who are helping us out.)

You will of course need a lawyer.  I used a lawyer from a list provided by ARR.  I haven't actually met her, but we have phone consultations and email back and forth.  It's worked well so far.  She even told us a few times when it didn't make sense to have the next meeting because we'd be paying when it might be avoidable.

Above all, you need a coping mechanism and a good sense of humor.  There's a great website www.resolve.org with resources for all different family-building options  It has helpful tips for family too.

Ironically as things move along (for the moment, until the next hurdle) I am less and less hopeful and increasingly resigned to the possibility that things might not work out.  Hoping hurts.  Be warned.  But while everyone you know is procreating, remember this: if you do get a baby in the end, you will celebrate in an entirely different way, and it will be all the more meaningful.