‘They’re gone, we lost them.’ A substitute teacher touched my belly. There was no belly. I had to mutter these words.’: Couple struggling with Fragile X Syndrome, infertility, finally pregnant with rainbow baby, ‘People tell me how strong I am. I wasn’t given another choice.’

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“Over the past few years of my life, I have had the very best moments and the very worst, all of which are centered around my children. Four years ago, my husband and I began trying for a family. We were extremely naïve and had no idea that there was a possibility that it ‘just wouldn’t work.’ Months and months of trying, two miscarriages, and a pile of negative tests later, we realized it was time to seek help.

Infertility is a scary, gut-wrenching diagnosis filled with unknowns and failed hopes and dreams. During the first months with my doctor, I was absolutely terrified. I had no idea what all of the tests were for and what my levels meant or how to handle the ups and downs of feeling hopeful, drained and defeated all at once. We tried four IUIs which all failed and led us down the road to IVF. At this point, I was considered to have ‘unknown infertility.’ Prior to starting IVF, a lot of blood work is required and this blood work led to my diagnosis.

Courtesy of Brittney Biederman
Courtesy of Brittney Biederman
Courtesy of Brittney Biederman

I was in the copy room at school (I am a kindergarten teacher) when I got the call from my doctor. It was one of those moments that I will never, ever forget. He told me that I had the premutation of Fragile X Syndrome and that he needed me to see a genetic counselor to learn more about the syndrome. There was a good chance I might not be able to have biological children. I dropped to my knees. I had no words. I sobbed and sobbed and sobbed. Words that I never expected to hear and I did not know what to do with them.

We took the summer to educate ourselves and to learn about our options. The doctor suggested we continue to do IVF in hopes that I would be able to stimulate but there would be a chance that I may not due to Premature Ovarian Failure. This comes along with Fragile X Syndrome. IVF is rough. It is draining in every single possible way. Daily injections along with doctor appointments every other day really take a large toll on your mental, physical and emotional state. But you keep going. You keep going because of the end goal and the possibility that it just might lead to you to your miracle, to what you have been dreaming of for so long.

After the injections comes the egg retrieval. For me, after the retrieval comes genetic screening of my embryos to test for Fragile X Syndrome and other chromosomal abnormalities. I had seven eggs retrieved and three made it to the embryo stage to be screened. Two of those embryos were healthy. We were over the moon. We went into the process knowing that we might not get any embryos. But two?! Amazing! We transferred our first embryo and it failed. A month later, we transferred our second and last embryo. Fail. I was at a loss. All of the hope and excitement I had was gone. After a few weeks, we decided to do another round of IVF.

Courtesy of Brittney Biederman
Courtesy of Brittney Biederman

The process began all over again but this time, we ended up with only ONE, single healthy embryo. I went into the embryo transfer with very little expectation but two weeks later, I took a pregnancy test and saw those beautiful two pink lines. My husband and I cried and cried. Such joy! This was what it was all about. This made every little sacrifice so worth it. Our one, little embryo became our son, our greatest joy.

Courtesy of Brittney Biederman

There is something weird about infertility. Even when you have beat it and landed on the other side, it doesn’t leave you. It leaves behind scars, fears, and triggers. Even after having my son, I was still sensitive to so much. People who complain that it took them three months to get pregnant. Pregnant women who complain every single day about how awful it is to be pregnant. Infertility is cruel and it changes you forever.

When our son was about six months old, we met with our infertility doctor again to discuss our options for another round of IVF for another child. Due to my diminishing ovarian reserve, we needed to do our third round right away. This round let to the most embryos yet – three! Such a blessing. We transferred one healthy embryo and to our surprise, it split and we were having identical twin girls. My husband and I were overjoyed. We felt extremely lucky and so excited. We found out that our twins were a rare kind and we would be a high-risk pregnancy. At 16 weeks, we met with the high-risk doctor for the first time. This was the worst day of our lives. We were told that our twins did not develop their brains. After all of the genetic screening and testing that we had done on our embryos, we never thought in a million years that something like this was even a possibility. We lost both of our little girls and it was the most awful moment of my entire life.

Courtesy of Brittney Biederman

Pregnancy loss is something that is not spoken about enough. What many people do not realize is the impact it has on every part of your life. One day, you are rocking your bump, prepping a nursery, planning a registry, talking about your hopes and dreams for your child, and the next day that child is gone. Every hope and dream stopped dead in its tracks. Paintbrushes laying behind a closed nursey door. A bump with no baby inside. People who do not know what happened so they continue asking you questions, to no fault of their own. Because I am a teacher, I had to write to all of my students’ parents about what happened and ask them to explain it to their 5-year-old children in the best possible way. I had to return to work two weeks after, void of a bump. A bump that the kids loved to rub and talk to. I ran into a substitute teacher who had no idea what had happened and she went to touch my belly. There was no belly. I had to mutter the words, ‘They’re gone, we lost them,’ followed by a panic attack because I couldn’t handle the situation and the thought of how many more of those may be to come. Talking about my experience helps me to remember my girls, express my feelings and spread awareness of loss in hopes of helping other couples to cope and to not feel so alone. For me, speaking with other couples who had gone through a similar experience was helpful and validated all of my feelings. It has been almost a year since we lost our twins and not a day goes by that I do not think about them or feel affected by their loss.

After losing our girls, my husband and I were unsure if we wanted to try again. I was scared of losing another child and terrified what my mental state might be during another pregnancy. After a few months, we knew that we needed to make a decision since my body doesn’t operate like other women my age. We decided to do a fourth and final round of IVF and see where it brought us.

Courtesy of Brittney Biederman
Courtesy of Brittney Biederman

Currently, I am 21-weeks pregnant with our little rainbow baby girl. My pregnancy has been highly monitored and difficult but I am happy to say that our girl is very healthy and my pregnancy is going well. Pregnancy after loss is extremely trying. My fears are heightened, my anxiety is high, and I worry every second of every day. I have days where all I feel is guilt and other days where I feel so excited. I am taking it day by day and week by week in hopes of getting this rainbow into my arms in April.

Elle, Ivy, and I Photography
Courtesy of Brittney Biederman

Infertility and loss have completely changed who I am and they affect me daily. People often tell me how strong I am. But for me, I wasn’t given another choice. I wanted a family. I wanted a baby. I did what I had to do to make it happen. I pushed through all of the obstacles that came my way because of the end goal and I would do it again. To anyone going down a similar route, know that you are supported, your feelings are validated and you CAN do it.”

Courtesy of Brittney Biederman

This story was submitted to Love What Matters by Brittney Biederman from Williamstown, NJ. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘48 years old, weeks shy of our 25th wedding anniversary, I’m expecting a baby.’: Woman shocked by successful IVF after being diagnosed with unexplained infertility, ‘I can hardly believe it’

‘The ultrasound tech lubed my belly. ‘OMG. There are SO MANY!’ My heart dropped. ‘So many what?!’: Mom births triplets after battling infertility, ‘It’s hard, but in the end it’s all worth it!’

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