Genetics and Late Loss: Alyssa’s Courageous Infertility Journey
1 egg retrieval
1 successful transfer
23 weeks of pregnancy
1 late loss
2 failed FET (awaiting results of third)
4 medical procedures
These are the courageous steps that Alyssa has already taken on her infertility path that she continues to walk today.
LEARNING HOW TO WALK THE PATH OF INFERTILITY
At age 22, Alyssa had surgery on her fallopian tubes and the overview report of the operation stated that the doctor was able to save her right tube, giving hope that when she was ready to conceive, she wouldn’t have an issue. However, after trying to conceive naturally for 6-7 months with no success, Alyssa went back to the doctor and asked if everything was in fact OK. They consistently said that despite being a unique case with two uteri, she had at least one functioning fallopian tube and from their perspective her body was ready and able to conceive naturally.
However, Alyssa knew something wasn’t right. She was healthy. Her blood work was perfect. Her hormones were perfect. A nurse practitioner at her doctor’s office even told her that what she was experiencing didn’t make sense to her. Tired of physicians at Kaiser saying everything was fine and getting brushed off, Alyssa told her husband that she was going to contact a reproductive embryologist (RE). At the time she wasn’t even clear about what a RE was or what they did, but she also knew she couldn’t keep feeling dismissed and disregarded.
Alyssa made the switch to her husband’s health insurance, which did include fertility insurance coverage and immediately started researching and asking around about clinics within the San Francisco Bay area. She booked an appointment with the clinic that many women in her life had gone to and experienced success and she chose her current doctor because he’s been performing IVF longer than anyone else in the Bay area, which equated to the experience and knowledge she was looking for.
It took just one visit with the new doctor for Alyssa to receive more thorough treatment. She walked into the office and the new doctor said that he had read her whole report and quickly realized that the one tube doctors said they left open after her fallopian surgery had in fact been closed. In the surgery overview there was a typo and rather than using the medical term to indicate the tube was closed, the notes included the term to indicate the tube had been repaired. However, in the minute by minute surgery report, the notes revealed that they did indeed close her tube.
Given her anatomy and situation, the new doctor thought Alyssa was an easy hormone patient and would respond well to the hormone treatments. It was something that he had experience with and that combined with the simple fact that within five minutes of meeting her he caught something that no one else had before and he knew what was wrong with her, completely sold Alyssa. With a plan and insurance to cover it, Alyssa felt her answer was relatively easy: “Sign me up!”
FIRST EMBRYO TRANSFER
Alyssa’s first embryo transfer was a success with Baby Cole in October 2019. When she got pregnant she was initially nervous simply because she was high risk due to her anatomy. However, when she transferred to her OB/GYN, she said Alyssa was healthy and the baby looked strong. Alyssa and her husband went ahead and did the recommended screenings so as not to be blind-sided in the anatomy scan and that was the start of the hardest part of their infertility journey.
At first, Alyssa was told her son had Down Syndrome. Then it was no longer that Cole had Down Syndrome but that there were issues with her placenta. Shortly after, her placenta was fine, but Cole wasn’t growing the way he was supposed to or expected. It was at this point that Alyssa’s emotions started to shut down and she found it difficult to talk to anyone.
She only told a few good friends and close family and shared with the infertility community that she had found online on Instagram. The reality was that no one knew what to say other than ‘I’m so sorry’. At some point Alyssa stopped sharing updates with family and friends simply because it took too much time to explain what was going on and she was tired of being the one who always had bad news to share. Alyssa had an amazing community of women behind her, but she was simply living in shock. From weeks 13-23 of her pregnancy (January 2020 – March 2020), Alyssa was dominated by stress and anxiety and poured herself into her work to try to take her mind off of the uncertainty of whether or not Cole would be ok.
One of the hardest days of Alyssa and her husband’s infertility journey was the day they were told that it wasn’t just that Cole was sick, but it was confirmed that he would not be ok. The day that this heartbreak became their reality, Alyssa had an MRI and six doctor appointments. She started at 6am and stayed until 6pm, with long waits in between appointments with various specialists and doctors. She had gotten used to these long days over the past several weeks, but this particular day ended with the devastating news that Cole was a carrier for a debilitating genetic defect that prevented him from producing testosterone adequately.
She remembers sitting at a table, hearing the words about what was wrong with her son and what they could expect for his life. It was on that same day, at that same table that Alyssa and her husband made the painstaking decision to go into labor early at 23 weeks, as they did not want Cole to suffer. The decision was made on a Thursday and Alyssa gave birth to Cole on the following Friday.
The week between making those incredibly difficult decisions and delivering Cole was by far the hardest week of Alyssa’s infertility journey. The week of the scheduled delivery, Alyssa recalls feeling like a mess and she depended on medicine to function. It was also the first week of shelter in place with COVID-19 and all of her work transferred to Zoom. Alyssa couldn’t imagine being at home for a full week with no distractions so, she chose to immerse herself in work. She would sit on her calls with the computer video turned off and she would take medicine early in the morning, the afternoon, and late at night in order to not let herself feel anything. Alyssa’s response to the hardest week of this journey was to rightfully let herself fall apart.
Slowly, the pieces were being put back together…Maybe not the same as they once were, but they were coming back together to create a new picture.
PICKING UP THE PIECES
How do you find the strength to stand up from such a loss and move forward? Alyssa found strength in her amazing husband and his response to the situation: “I’m going to control what I can control.” He had lived a life full of challenges and was used to things not going his way. Alyssa lived a more sheltered life where she was privileged to follow what is seen as the traditional path of going to college followed by grad school, getting an apartment, and then starting her job. Things fell into place and happened for Alyssa and she recognized that she was blessed in how she grew up, with parents who helped set her up for success. In contrast, Alyssa’s husband expected his world to be rocked because things did not go as smoothly for him. He fully recognized and acknowledged that the loss of their son was terrible but because it wasn’t the first challenge he had encountered, he also had the coping mechanisms to work through the loss of Cole. He threw himself into work, he fixed all that he could around the house and most importantly, he took care of Alyssa. He controlled what he could.
After she had Cole, Alyssa’s work gave her six weeks off. She talked to a psychiatrist, she talked to a Bereaved Mother’s therapist, and she had people reach out to her who had gone through similar experiences and losses. She talked to some family but didn’t talk to friends and kept to herself, partly because of the enforced quarantine. She filled her days with personal work to stay busy.
And then, one morning Alyssa woke up and said she couldn’t take the medication anymore. She needed to go back to work and she needed to get her life back. She needed to start taking care of herself again. She made an active and intentional choice. Alyssa started to eat more, go out for daily walks, and it was when she started her routine again that some things just fell back into place. It might sound simple but going outside for a walk everyday was what truly started her day and got her to the point where she was finally feeling like the pieces were being put back together. Maybe not the same as they once were, but they were coming back together to create a new picture.
“I think back to sitting in that chair with the genetics counselor and I wish that she would have asked more questions. We didn’t know. Maybe that could be on me, too but she was supposed to be counseling us.”
CHALLENGES OF INFERTILITY
While Alyssa has had a supportive and transparent RE, the one gap in her journey through this process has been how her genetics were not explored further despite her history and her anatomy. Her mom lost a baby boy at 33 weeks before Alyssa was born and being 34 years ago, doctors had suspicions but there was no viable testing that could be done. When Alyssa shared this with her original genetic counselor, they suggested completing a karyotype, which came back “great”, and so pre-implantation genetic screening (PGS) was suggested in order to “get things going.”
Knowing what she does now about genetic testing, Alyssa doesn’t think they could have done much more but at the very least they could have brought up possibilities and they could have gone to UCSF for more extensive genetic testing. It might not have changed the results, but they would have had more information and the opportunity to make the decision to initially do more testing earlier in the process. It wasn’t until after they lost Cole that Alyssa and her husband had the additional genetic sequencing test completed by entering a research study. Because they participated in the study, they were able to get the results back in a quick two weeks and didn’t have to pay for what costs some individuals $5K - $20K out of pocket.
However, Alyssa chooses to no longer think about what could have been different had they learned more sooner and instead focuses on being thankful. She meets women every day who don’t know the root cause of their infertility and aren’t offered or provided the necessary tests to find out. These women don’t know if they are going to have another baby with harmful or debilitating disabilities and Alyssa recognizes and appreciates that she now has answers.
Alyssa has also met thousands of women on Instagram who are at clinics that don’t have access to or say they don’t have access to the same resources. She knows of women who are shuffled around to different clinics for various procedures or have doctors that only follow a generic protocol and tell patients that if they want/need anything outside their standard approach, they will have to research other protocols themselves. Alyssa has heard of clinics that won’t disclose the sex of the embryo and doctors that won’t perform frozen transfers or don’t believe in PGS testing because they think it alters biology. Perhaps most challenging are the baseless claims that Alyssa has heard from other women with clinics promising a baby or unlimited egg retrievals with a simple $20,000 payment.
“[Infertility Treatment] is really not regulated. It varies state by state, and it is what the clinic wants to do...It is sad that not everyone can get equal care.”
LACK OF REGULATION
These challenges with seeking treatment for infertility are only exacerbated by the lack of infertility treatment regulations and policies. For Alyssa, it was when COVID-19 hit and everyone’s treatment and treatment options began to change that she really saw the impact of an unregulated infertility industry. While Alyssa’s clinic deemed IVF essential during the pandemic, she has spoken to women in Boston whose clinics closed, and their infertility treatments were halted. There were contradicting messages from the American Society for Reproductive Medicine (ASRM), the self-regulatory body for infertility treatment, state governors, and mayors but ultimately nothing more than guidelines were provided, and clinics were left to make individual decisions.
Alyssa knows of women that fly to specific cities, like New York City, San Francisco, and Chicago or even to different countries to gain access to the infertility treatment that they need because it’s not available and/or affordable where they are located. She’s spoken to women about the specific genetic testing that gave her answers about Cole’s condition and other women have never heard of it and when they brought it up to their own RE doctors, were told it wasn’t something that could be done.
Without infertility treatment regulation, Alyssa feels that infertility clinics are free to gamble with emotions and hope with zero consequences. She knows of women that feel like they are going into completely unregulated clinics that can make substantial claims and promises of a guaranteed baby with no consequences when those promises are not delivered. Instead, these women are left with empty arms and broken hearts, while the clinic is rewarded financially with an increased profit. Contracts are signed, but Alyssa notes how not everyone is trained to read contracts carefully like her husband. Women walk into a clinic and are hopeful after they have tried naturally for two years and have walked the infertility journey that has only filled them with heart ache. You sit down with someone who is supposed to be an expert and they promise they will get you pregnant and make you a mother. Except, it’s one year later, you are still not pregnant, and you are still without answers as to why.
Alyssa recognizes that with no regulation, a clinic or a doctor can accept you even if they don’t have your best interests in mind, even if they aren’t looking at the research and the statistics, even if they aren’t following best practices...they can accept you and take your money even if it’s not right.
“We are told to trust doctors. We are told not to question them. So, you sit there, and you say ‘Ok, I’m ready. Let’s go.’ And you sign on the dotted line and you pay thousands and thousands of dollars, only to be let down. Then you look back and you wish they had been more transparent from the beginning. You wish they had shown you the statistics from the beginning. You should have shown me the research.”
VALUE OF TRANSPARENCY AND OPTIONS
Alyssa knows far too many women with this experience and it’s what she appreciates about her clinic. Her RE will often pull out a giant medical book and go through it with her. He will talk to her about published articles and the current research and has always been very upfront about how high risk she is, which is reflected in his conservative approach to her treatment. In her second transfer, Alyssa’s RE doctor told her: “I want to get you pregnant, but this is maybe a 65% chance. I am setting realistic expectations.” Yes, the information can make her feel scared, but it also makes her feel like he is being open and honest with her and that is exactly what she wants from her doctor that is helping her on the path to becoming a mother.
She’s read online reviews of her clinic where people have complained about the clinic’s transparency and how they set expectations that were lower than desired. In Alyssa’s case, she was told that they would potentially get five normal PGS embryos, but they ended up retrieving 12. The clinic had set the bar low, but Alyssa appreciated that because she was never sold on a result. She was read all the statistics and even given a piece of paper to do the probability calculations with them: based on your age, this is where you fall; based on your anti-mullerian hormone (AMH) levels, this is where you fall. Alyssa was never “promised” anything but was instead shown what they were going to aim for given her specific circumstances. The expectations were clearly defined.
Along with transparency, Alyssa has always felt that her RE has provided her with options and reasons for why he might recommend one option over another. She has never felt like she was left to figure it out herself nor has she ever felt her doctors didn’t care what she did. The suggestions she has been given have always been backed by research and best practices and they have always been completely transparent and accessible to her. Most importantly, Alyssa has felt that her doctors have been invested in her health but also invested in helping her make informed decisions that protect not just her own well-being but the well-being of her potential baby.
“You are not alone. There are so many women out there who have been and are in the exact same position as you are right now…There is a community out there that can help bring you up.”
FOR THOSE WOMEN WALKING THE INFERTILITY PATH:
“Unfortunately, I’m not going to say, ‘hang in there, it will happen’. I know far too many women who are on their 5th and 6th retrieval and they still don’t have any eggs. It might not happen for them.
But I would remind you that you are trying the best that you can and doing the best that you can. It’s a medical condition there is nothing you did that that caused this. You are putting your all into something. At the end of the day that’s what matters. You can’t do anything more. If it’s going to happen, it will happen.
You are not alone. There are so many women out there who have been and are in the exact same position as you are right now. I’m sure I could find someone with the exact same story as me. There is a community out there that can help bring you up.
Keep trying until it doesn’t feel like the right thing to do anymore. If you wake up and feel that it’s not the right thing to do anymore and it’s sucking you financially and sucking you emotionally, it’s disrupting relationships, and destroying who you really are at the core, then you don’t have to do it anymore. You can stop. You can try plan B, C, D, E, or whatever you want. But you don’t have to do it.
However, while you’re in it, you’re giving it your best and it’s not your fault. You are strong and hopefully it will happen.”
You can continue to follow Alyssa on her infertility journey @healthyivf on Instagram.