Lyn and her husband, Frank had a very long road and journey to create their family. Lyn was diagnosed with Fragile X- associated primary ovarian insufficiency. Besides Lyn’s fight to have a baby – her sister, Trish was also diagnosed with the same condition. Two sisters, with the same diagnosis, trying to complete their dreams of motherhood. Here is their story in Lyn’s words:
I look back on it, and I think I cried more for my sister because I thought about how I would feel if the same thing happened to me. Finding out about her first, somehow made it a bit easier when I got my test results. I still went to pieces, but at least I had an answer. I was lucky and grateful for not only having her support but a loving partner when I found out.
I received my Fragile X carrier positive test results when I was at dinner with co-workers. I am not good at hiding my emotions so after calling my sister, I called Frank to come pick me up. My sister told me about her results a few years before I had the courage to find out for myself. I wasn’t ready to know, I was still healing from my divorce, the birth of his kids with his new girlfriend, trying to find myself, and date. I found out because it was time. I had found myself, and Frank, fell in love, and knew it was time to face it.
Fragile X is a genetic condition that causes intellectual disability. 20-25% of women who are carriers of the premutation are diagnosed with premature ovarian failure (FXPOI), also known as premature menopause. (Source: https://fragilex.org)
Once I found out I was a carrier, my next step was to find out if I had any eggs. The test to find this out is the AMH (Anti-Mullerian Hormone) test. I had to push my doctor to get this test, per my sister and my research, so I want others to know about it. Be your own advocate. Don’t go through a year of testing, wasted tries/drugs, and money (which is what the doctor wanted) when you can find out with one test. Men are tested to find out their sperm count and mobility, this should be a standard initial test for women, but it isn’t. My results were less than .03, in other words, none.
I know I fell apart in Frank’s arms, but at this point I had found a support group of other women dealing with some sort of infertility. All of us had our own stories, each of them heartbreaking in their own right. Because of this group, I was grateful that I (we) had a definitive answer. I (We) had a path. Many women can’t get a diagnosis and go through so much more, still don’t conceive, and don’t know why.
Next came research and planning when and how. Frank had not even proposed yet when we got the test results. There was no question in my mind that we would be getting married. I never saw him falter, we were already partners in this and in life. I can’t even begin to explain how grateful I am for him, his support, and his love. Once he proposed, we set a date for the next year. We decided to setup a gofundme account for the wedding, instead of a registry, to help with treatment expenses. It would cost about $25,000 for the first try and about $10,000 for any try after with remaining embryos from the initial donation. I set a goal of $40,000 because that was the cost of a specific refund program at the time if you didn’t have insurance. Most insurance plans do not cover infertility treatment. We received about $3,000. We appreciate every single donation and support that was given.
Then I received amazing news, I really needed it at this point. My company, which was going through its first merger, may possibly have coverage soon. I couldn’t believe it, $15,000 coverage, we used every penny for the first try. We still paid some out of pocket with the gofundme donations, etc. Again, grateful! We went through another merger shortly after that and coverage changed, but in a good way. It went up.
I could write another article about going through the actual treatments. The pain of the shots is not as bad as the waiting, both hurt significantly. The first try was not successful. The second try ended with a beautiful baby girl and a very rare birth story. Eve Eunice was born 10/15/17. My body doesn’t do anything ‘normal’. That is one of the many things I have accepted through all of this.
The photo below is Baby Eve – all the science, love, support, and courage it took to bring her into this world. (Photo credit: Bri Marie Photography)
My sister’s beautiful baby girl was born 3 months and 3 days before mine. (See photo below: photo taken by Lyn’s sister, Trish.)
One of the Embryos in the photo below is Baby Eve.