Part 7: Genetic Counseling

Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8

                                                     (Two of the loves of my life.)

After my most recent miscarriage I began to wonder if I was just done.  I have 3 beautiful girls and a long road of residency for my husband ahead of me still.  I have met so many other women over the past few years with a similar story.  About 1/2 of them say they are done – they have dealt with pregnancies that have been so hard on their bodies and have decided to focus all their energy on the children they have.  The other half seem to be determined to find a way past it – either through adoption or finding a way to continue having children themselves.  Women from both groups have been such an inspiration to me on both points – putting everything into being a better mother and/or putting everything into being a mother to more.  The hard part for me has been to decide where I stand and what I want, which is why I started blogging about it.  Forcing myself to get it all out and analyze it has really been helpful to me.  For each post I write I am forced to think about how I feel and where that is taking me for days (or weeks) leading up to it ~ So thank you! for letting me share this part of my life with you.

About 5 months after I lost my little boy an overwhelming determination hit me.  I was thinking about about the crazy events surrounding my 3rd daughters birth.  I looked over at her playing with her banana peel – one half bobbing up and down as the boat in the “water” as the other half (an elephant) was talking to the imaginary fairy, trying to help him back on board.  Later that day while folding laundry I was looking at a picture my husband made for me on Mother’s Day that has an individual photo of me and each of my girls during their first week of life.  They are so beautiful!!!  I want to relive those moments again and again.  I know I’ll hit a point where I feel like I can be “done”, but not now!  I want those experiences as many times as life will allow them to me.  I picked up the phone and called my O.B. and asked for an appointment.  I wanted to know just what I was looking at and where I needed to start.

I think I may have been one of those buggy patients that would just not accept what he told me.  I wanted more children, and I wanted a better chance at getting them here.  I wanted to know why I was having miscarriages and what people could do about it.  (See, I was buggy.)  My main point I was getting at was trying to be able to decide if I was going to continue trying to get pregnant (either now or what I needed to be able to do to try again) or if I wanted to adopt.  He agreed to run 2 very extensive blood panels – checking for auto immune diseases, blood clotting disorders and a whole slew of I don’t know what else.  It took weeks to get all of the results back – as they would come in one at a time and my blood-work was actually lost at one point and had to be re-done.  Wouldn’t you know?  The very last test came back abnormal!  Not that I was excited to find out I might have a problem, but I was thrilled at the possibility of having an answer and more importantly a solution!

I was sent to see a high risk O.B. office which had a genetic counselor on staff.  This was SO cool.  If you have access to a genetic counselor and have had 2 or more miscarriages, I highly recommend a pre-pregnancy consultation.  You can find out more information about the office I visited here.  The counselor had both my husband and I go through a detailed family history.  She wrote down a family tree including myself, all my siblings and their pregnancy history as well as any health issues their children have all the way up to our grandparents.  We then did that again for my husband’s side of the family.  She had 6 major things she was looking for – several of which were treatable, several of which would not be treatable but result in an answer with a statistic on how likely we were to continue having miscarriages.

Most of the list was quickly ruled out by the fact that we had had 3 successful pregnancies.  (I wish I could remember details better to give you an idea of what to expect, but I focused all my attention on the things that applied to me.)  We walked out with 2 most likely possibilities – 1 that was treatable and 1 that was not.  The first question was whether or not I had a blood clotting disorder.  The blood tests that my doctor had done which had the 1 abnormality pointed to the possibility that my blood would clot, causing a clog in the placenta and cut off blood / oxygen supply to the baby.  The solution would be to receive injections of stronger blood thinners.  Because I had responded so quickly to the baby aspirin to get pregnant, that was another indication that thinned blood had helped with the previous pregnancy even though he still didn’t make it.  It was kind of hard to take, thinking that if I had just known this 6 months ago we would have a newborn sitting on our laps.  To determine if this was the absolute reason I was to do more blood tests.  The second possibility was that one of my or my husbands chromosomes had split at some point – making one strand of DNA slightly longer than the other piece that goes with it slightly shorter.  (Sorry, I can only vaguely describe this! but my genetic counselor made it clear enough for me to understand the general idea).  As long as both long and short piece were passed on to our baby it would balance out and be okay.  If they got one long and one regular piece or one short and one regular piece it would end in a miscarriage.  One possibility was that the chromosome affected was the one that would determine male or female – resulting in a miscarriage of all our boys and live births of our girls.  I was just amazed at all the possible answers they had and that there were ways to find out as well as solutions to some.  The expensive part of the visit was blood-work, the visit itself was rather reasonable and well worth knowing what possibilities we were looking at.

The last thing that I was able to find out was the gender of my miscarriages that had a DNA sample.  Although my O.B.’s have told me there is no way to tell, she was able to look at the lab result and tell me within 10 seconds.  I only have 2 tissue samples from miscarriages – one we were unable to locate from 10 years ago.  The one I did have was from my most recent – he was a boy.  For me knowing it was a boy gave me a lot of peace and I have been able to deal with my loss better.

It took another 2 months about to get all the tests back on both my husband and I – we did them one at a time starting with the most likely answers in the hopes of not having to run all of them and help save on cost.  The end result is that while it does not show as a huge way off number, I do have a slight blood clotting factor and the higher doses of prescription blood thinners could change things.  I’ve also been put on a hormone to take leading up to pregnancy (the same one I take while I am pregnant) to help start off right.

I have been surprised to find out how many women have had success with the blood thinners – it is actually not too uncommon and VERY easy to treat.

Going through these tests and seeing a genetic counselor has really empowered both my husband and I to be able to go into our next “round” with confidence that we have a chance at coming out successfully.  I’ve continued to receive OMM treatments and my husband has now learned enough that I am able to be treated more consistently.  At my last visit with his professor that I now resemble a more average person and she does not “feel” injuries in most of the parts of my body.  It is really exciting to know that my chances of a healthy and successful pregnancy have gone up.  Wish me luck!

I would love for others who have found answers to their pregnancy / miscarriage issues to guest post for us and share what you have learned.  More and more I am finding that this is not an uncommon story and there are solutions out there!

Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7