You don’t know what you don’t know. I share my story in hopes to help guide others in finding out what questions to ask from the start and throughout your journey. One bright thing I see as a glimmer in my journey thus far – there is no lack of learning. Sharing the power of questions and how advocating for yourself on the fertility path is important.
Categories of Your Fertility Journey
Our reproductive endocrinologist recently told us there are three main buckets that make up the fertility journey:
- Medical
- Emotional
- Financial
When we started this journey, like many, we were focused on the medical bucket and in search for answers that would lead us to WHY we weren’t getting pregnant and what steps we would need to follow to get pregnant.
Chromosome Analysis Test
After nearly a year of “pre” scans and tests and an unsuccessful IUI, we did our first IVF retrieval cycle. Three weeks after the retrieval, we received the news that one of our embryos sent off for PGT-A testing was euploid – meaning viable for transfer. The other three were aneuploid (not recommended for transfer due to abnormalities), but a few markers were enough for our RE to question whether there was a “translocation” at play here. We received a call right before our Christmas holiday travel that a chromosome analysis test was ordered for both my husband and me. We rushed downtown to complete the bloodwork and settled in for another week of waiting.
Two days before the new year we learned that I, in fact, DO have a chromosome translocation.
(A chromosome translocation can happen when a piece of one chromosome breaks off and attaches to another chromosome. I have a balanced translocation and my total genetic material remained the same at the point of creation, the strands just found a new home to attach to within my genetic makeup).
We started this journey with an understanding that there was an underlying ‘medical’ reason that we were not getting pregnant the traditional way. After this experience of learning about a condition neither of us had any idea was a possibility, really opened our eyes and helped steer us to have a different approach to our fertility journey management.
PGT-SR Testing
We learned that due to the translocation, we would need to have our embryos from future retrievals PGT-SR tested. The SR stands for Structural Rearrangement and is a more specialized form of testing.
Now back with family over the Easter holiday weekend following our second retrieval, we received the consent from our dedicated third party lab where our embryos would be PGT-SR tested. The cost difference was astronomical compared to our first cycle with PGT-A testing. In a panicked state of not wanting to waste any time in getting answers on these embryos, we paid the invoice while simultaneously messaging our team at our fertility clinic about the drastic change in cost for our embryo testing.
Letter of Appeal
Through our inquiry, our RE offered to write a letter of appeal to our insurance company explaining the medical necessity of the PGT-SR testing due to my translocation. “Individuals with balanced translocations are at an increased risk of producing gametes with unbalanced chromosomal arrangements, which can result in miscarriages, stillbirths, and offspring with chromosomal abnormalities such as trisomies or monosomes. These outcomes can lead to profound emotional distress for the patient and their family, as well as substantial financial burdens on the healthcare system.”
After nearly two months of back and forth with our provider and our insurance company, our Prior Authorization for coverage of PGT-SR testing was approved. We were heading into our next cycle and the financial relief that our PGT testing would be covered was a welcomed weight lifted from our shoulders as the emotional stress began to rise with each new cycle we never expected to experience.
We never would have known to ask about the option for financial relief if it hadn’t been offered by our doctor when we finally raised the concern of the increase in cost for the PGT-SR testing.
Options Available to You
In that moment, it struck me that countless others might find themselves in similar circumstances, completely unaware of options such as Prior Authorizations, appeals, and letters recommending patients for grant funding that could be available to them.
What started as a quest to find out what medically needed to happen for us to overcome our infertility, quickly turned into the rollercoaster I’ve heard many others experience. As one bucket felt manageable, the other two became overwhelming, sometimes unexpectedly, creating a sensation of helplessness neither my husband nor I were prepared for. The uneasiness forced us back into that curious mindset.
Be Curious
At every stage of your journey, be curious. Keep engaging with your providers and asking questions to find answers and relief in all three areas of your journey – medical, emotional, and financial. Being proactive in seeking clarity and support across these areas can empower you to make well-informed choices that enhance your overall well-being.
Never hesitate to dig deeper; your curiosity and self advocacy are essential in ensuring you receive the best care possible. Reevaluate often and be kind to yourself as you navigate down YOUR path. Every new piece of information will open doors – you just have to be curious enough to find new answers.
Written by Stephanie Skunda, for the Hopeful Mama Foundation. We are incredibly grateful to all of our writers, who open up their heart and share their journey with this community. If you would like to connect with one of our writers, please let us know by submitting an email on our website’s contact page.
“Stephanie, originally from the Detroit area, lives in Chicago with her husband and their beloved dog, Nangu. She is a second career nurse, working in Breast Imaging and Pediatric Allergy. Moving from a career spent leading experiential marketing campaigns across the country to becoming a dedicated nurse, she has discovered a profound sense of fulfillment in patient care. Now a patient herself going through IVF, her personal journey has deepened her commitment to support others with compassion and to empower them through their own experiences. Whether she’s strolling with her pup to the lakefront or exploring the nature preserve with her husband and Nangu, Stephanie is always searching for ways to be outside, ideally by the water.”