Campaign Story

My name is Brianna, my husband is Matt. I have CMT and he has Sertoli-cell Only Syndrome. Three years ago, we began our journey to parenthood as newly-weds with so much hope for the future. Each cycle, I tracked my ovulation and with each negative pregnancy test, we became more and more discouraged. I sought out a fertility doctor after a year of trying. Labs and ultrasounds proved unremarkable and the doctor suggested a semen analysis and workup for Matt. He put off the semen analysis for a while, terrified of what the result would be. Once I finally convinced him it was time, our greatest fears were confirmed. No sperm present. After a trip to a reproductive endocrinologist, my husband was started on Clomid for three months to hopefully increase sperm production and correct a low testosterone. 3 months of Clomid and another semen analysis later, no sperm. Three months quickly became nine months of Clomid and we were no closer to our dream than before. We sought out a second opinion and found a doctor that immediately got the ball rolling. He ordered labs, genetics, and an ultrasound to start. Labs now normal, good news! Genetics shows two Y-chromosome abnormalities that can affect fertility, bad news. Ultrasound showed varicose veins reversing blood flow which can affect fertility, more bad news, but they could be fixed with surgery, good news! The doctor was very hopeful so surgery, biopsy, and a testicular extraction to collect semen and look for/freeze sperm for possible IVF in the future was scheduled. The surgery went great, testicular extraction not so much. Hours later and the embryologist contacted us to let us know that even within the testicles themselves, there was no sperm collected. We had to wait a painfully long week to see what the biopsy showed. Sertoli-cell Only syndrome, a syndrome incredibly rare due to his genetic abnormalities previously found. This syndrome means that my husband does not have ANY sperm cells to produce sperm, only sertoli cells. Had he been able to produce SOME sperm, we would only have a 13% chance of conception with IVF, however he produced none at all. That night, I held my husband as he bawled into my chest, knowing that he could never father a child of his own, and once he fell asleep, I grieved myself wondering how life could be so cruel. Weeks passed and we began to come to terms with the diagnosis and started planning for our next steps; sperm donation with a known donor and IUI. We decided to ask my husband’s brothers if they would be the donor, this way the baby would share genetics with my husband. Both of them were more than willing to donate and we were so relieved. We thought this would be a simple process and boy were we wrong! We quickly learned that utilizing a known donor came with a long list of hurdles and a lot of debt. We were instructed to contact an attorney to draw up a contract between us and the brother we planned to use, I was instructed to get tested for CMV (cytomegalovirus) because if I was CMV negative and the brother was positive, we would not be able to use his brother as a donor because while 70-80% of adults have been exposed to CMV during their lifetime, an active CMV infection during pregnancy can be incredibly dangerous for baby, and we were told that after all was said and done, the brother would have to get a host of labs drawn, donate to a reputable sperm bank and the sperm would need to be quarantined for 6 months and tested after that time before use, pushing our dreams even further back. My husband had struggled for weeks at this point with depression and coming to terms with one of his brothers being the “father” of our offspring. Once we began the process, he was finally showing excitement, wanting this baby as much as I did. However, it came crashing down when we learned that I have never been exposed to CMV and BOTH brothers were positive making them unusable as donors. That night, I once again held my husband as he bawled and I cried myself to sleep. A few weeks passed and it was time to look at unknown donors, which actually made the process easier with less hurdles in our way. My husband wanted no part in the donor search but was right by my side for everything else. We still planned for IUI. I quickly chose a donor with the help of my mom and patiently waited for each appointment with the fertility doctor who sent me to a million different doctors to ensure I was healthy as a horse before our IUI appointment. Then I fell. A nasty fall on vacation led me to an ortho doctor that found a lot of things about me peculiar. He began asking questions that were unrelated to my fall and I was becoming increasingly more confused until he asked me if I had ever been diagnosed with Charcot Marie Tooth disease, a progressive genetic disorder that destroys the nerves in the body leading to many falls. He explained that I exhibited nearly every symptom and he recommended I find a doctor back home to do a workup. I quickly told my fertility doctor what was said and our fertility journey was paused– again, so I could be adequately worked up for CMT. I had several appointments with ortho doctors, physical therapists to help me rebuild strength after my injury, 2 nerve conduction studies to verify nerve damage, a genetic test that confirmed their suspicions and an appointment with a neurologist to pretty much tell me that this disease would worsen throughout the entire course of my life and even worse, the disease was hereditary and affects every individual, even in families differently. So while I may have minor symptoms now that may become severe when I am older, my baby could have a more severe form than I. Realizing that this could be the disease that has placed my grandfather in a wheelchair and could harm my own baby, I broke down. This time, my husband held me as I bawled into his chest and I tried to think through what our next steps would be. As I came to terms with my own diagnosis, having had already bought the donor sperm vials, my husband and I decided that we would continue on with our plan to have a baby via sperm donation, this time with IVF and genetic testing to ensure my child would never suffer from Charcot Marie Tooth. This journey has been a rollercoaster to say the least and has tested us time and time again. It has at times caused riffs in my relationship with my husband, has made it hard to go to work as a NICU nurse envying the parents of the babies that I care for each day, and has made me question my faith on numerous occasions, however I know it will all be worth it once we get our miracle. We are set to begin IVF in September and raising money for all that entails is just one more hurdle we have to get through.