A Battle With Balanced Translocation: Lauren’s Infertility Journey
“People tell us that our time will come, and we’ll get pregnant. But our time may not come, and I have to sit with that. I have to understand that we could go through all of this and still get nowhere closer to having a child the way we wanted. I have to be okay with the fact that we might have to adopt, or we might have a life without kids.”
“I think I’m open about our journey and struggles, and I think I try to portray that I’m strong. But as much as I want to share, this is all so vulnerable.”
When Lauren and her husband decided to start trying to have a child, they knew there was the possibility of infertility struggles. Lauren’s mom and dad struggled due to her dad’s diagnosis, and they just needed some medication to get pregnant. Being an issue with her dad, Lauren assumed that if it was male factor, she wouldn’t have it or face the same struggles. However, her husband’s family is a carrier for balanced translocation. He’s the youngest of four siblings and two of his oldest sisters have it, while the third sister does not. Lauren and her husband looked at the 25% pass rate and thought what are the odds that three of the four siblings have it? Well, apparently, very likely.
DISCOVERING BALANCED TRANSLOCATION
“We waited to test my husband because it was expensive. We knew it could cost up to $1,000 USD just to get tested and so we decided to wait and see if we were the lucky ones. We held on to the thought that maybe he didn’t have balanced translocation and we would get pregnant right away. We also knew that males with balanced translocation have a harder time getting pregnant but once pregnant, there aren’t as many miscarriages as seen with females that carry the balanced translocation. For us, it’s the getting pregnant part of the equation that is so hard.
We started trying in July 2018 and in October 2018 I started getting bad anxiety over not being pregnant even after tracking ovulation. It was a vicious cycle every month when we wouldn’t get pregnant and because my obstetrician (OB) knew about my husband’s family history, she didn’t want me to go an entire year trying naturally before coming back to see her. When March 2019 rolled around, I was in denial and thought maybe we’d have a COVID baby. But by May 2019, I was done with trying on our own and my OB connected me with a reproductive embryologist (RE).
After trying naturally with no success, we ran tests on my husband and myself and the results showed an abnormal sperm analysis for my husband. That’s when our RE asked for the karyotype, knowing the balanced translocation was a factor in my husband’s family history, and we ran a more in-depth sperm analysis. We learned what we suspected, and my husband was a carrier for balanced translocation and that was affecting the sperm.”
WHEN IVF IS YOUR ONLY OPTION
“Finding and creating a support system on this journey is a balancing act of having the support you need and finding the people who are willing to listen and not just talk.”
“With these results, the RE recommended we go straight to IVF, but we were hesitant. My husband’s father, who was a carrier, didn’t need it and my husband’s oldest sister ended up getting pregnant on just Clomid. So, we decided to try Clomid first and then try intrauterine injection (IUI), if needed. We went the least invasive, least expensive route first. We did four rounds of medicated cycles using Clomid in the fall of 2020 and four rounds of IUIs in the first part of 2021. It obviously didn’t work for us but at the time, a $25,000 expense for IVF was not something we could do.
Having to move on to in vitro fertilization (IVF), we were lucky with our first round. We retrieved nine eggs, all nine eggs were mature, seven fertilized, and we had five resulting embryos. We felt great and hopeful that at least one of those embryos had to be normal. But unfortunately, not one of the five embryos tested genetically normal. Of the five, we had a high mosaic and low mosaic embryo and our current doctor here in Arizona has said he will transfer a low mosaic if that is the only embryo we end up having. But, given my age, we want to do a couple more rounds of IVF to see if we can get any normal embryos before transferring the low mosaic.”
What is a Mosaic Embryo? When embryos are tested, the hope is that each tested cell has the same number of chromosomes, specifically 46 chromosomes. Those that do have 46 chromosomes are defined as ‘normal’ and those that do not (i.e. they have an extra chromosome or are lacking a chromosome) are defined as ‘abnormal’. When the proportion of abnormal to normal cells within the tested embryo reaches a certain threshold, an embryo is called a mosaic. The threshold to be classified as mosaic varies slightly with each lab performing the tests. In general, a low-level mosaic embryo has a higher proportion of normal cells to abnormal cells and a high-level mosaic embryo has mostly abnormal cells and a lower percentage of normal cells.
RESTRICTED TIMELINES DUE TO EMBRYO TESTING
“In addition to worrying about balanced translocation, we’ve found out that we are both carriers for cystic fibrosis, which means there is another test our embryos will have to pass. Our first five embryos did not pass two different tests and now our next embryos will have to pass three independent tests.
Our timeline for when we can start a new round of IVF is completely up in the air and dependent on when the testing facility will finish creating the test for cystic fibrosis. We are hopeful that it won’t be several weeks of development since I have the most common gene for cystic fibrosis and my husband has a common gene. However, I have heard that the testing facility could ask for blood from us, and from family members who are carriers. Our doctor told us to prepare for the worst case, which is that it could take months before they are ready for testing.
Even more complicated with our timeline is that in Phoenix, most of the clinics do batch cycling, which means they start everyone’s cycle at the same time each month. You literally have one date/week every month to do an egg retrieval. Everyone starts birth control at the same time so that everyone starts the IVF stimulation protocol at the same time and all egg retrievals are completed in one week.”
“We joke that we’re now diamond members with Hilton because we have spent so much over the last year on infertility treatment.”
CLINICS CALL IT A CONSULT…I CALL IT AN INTERVIEW
“When we moved to Arizona and needed to find a new clinic, we used referrals from girlfriends here who had to do IVF, and I also looked to our insurance to see what clinics were covered. We interviewed four clinics and I say interview because while they call it a consult, it’s my chance to interview them. I want to see how comfortable we are with them.
We didn’t like anything about the first clinic, and we were going to go with the second clinic but when we told him we had balanced translocation, he told us to immediately stop trying naturally. His concern was that we could have a baby with Down Syndrome or some other illness. That didn’t bother or scare us, and we would welcome a child with Down Syndrome. I ultimately followed my gut after that comment and decided to keep interviewing more clinics. I was waiting two months out to get in and get a consult because they give you 30 minutes to an hour to talk through everything and blocking that amount of time on the doctor’s schedule is not easy.”
FINANCIAL BURDEN OF INFERTILITY
“We have always been burdened by debt, to include massive student loan debt, despite making a good living between my husband and myself. The clinic gives you an estimated cost, especially if you are paying out of pocket, and we had to delay starting IVF given the amount we would be responsible for paying. They wanted us to pay around $40,000 USD to guarantee two cycles and two egg retrievals and we just couldn’t do it right away. We used our retirement funds to pay off all our other debt and ensure we didn’t go into more doubt once we started IVF. Luckily, we have great credit and were able to get nearly 0% interest credit cards to pay for IVF. We joke that we’re now diamond members with Hilton because we have spent so much over the last year on infertility treatment.
When we were ready to start IVF, I was working as a contractor and had no benefits. I was paid hourly and when I didn’t work, I didn’t make money. My husband had a good job, but they didn’t offer fertility benefits. So, we both started looking for new jobs and my husband found a leadership opportunity with American Express, a company that offered fertility benefits. The job required us to move to Phoenix, AZ and although his old job offered more money and fought for him to stay, the fertility benefits alone at American Express equated to a $25,000 USD raise. We chose to move to Phoenix over New York because we can live with my in-laws to save even more money but intend to move into our own place in the next few months.
Just after moving to Phoenix, I accepted a job permanently with a company that announced they would also start to offer fertility benefits. So, now we both have fertility benefits after having none. It gives us a security blanket where if we exhaust all of benefits, we can then use my husband’s. However, being on both insurances for fertility is expensive. We are likely saving money overall but are still spending $700 USD a month on our health insurance, while also paying premiums and a penalty on my husband’s insurance because I can get insurance through my company.
We’ve absolutely made a lot of sacrifices financially. Vacations are hard to come by and the one we did take was because his parents had a timeshare, we got our hotel for free, and I had a companion pass from Southwest for buying a trip last year. The total trip cost less than $2,000 USD for the week. I don’t think people understand how big of an impact infertility has on you financially. We are in our mid-30’s and while we owned one house previously, we can’t buy a house right now. We’ve depleted our savings and the savings we have built back up is there to pay for the next round of IVF. It feels like we can’t do anything because every dollar needs to be saved for our fertility treatment.”
“I’ve always envisioned being pregnant and having a family of my own…It’s this dream and vision that keep driving me forward and wanting it so badly that I will exhaust all resources and will try anything to make my vision come to life.”
THE BALANCING ACT OF AN INFERTILITY SUPPORT SYSTEM
“Finding and creating a support system on this journey is a balancing act of having the support you need and finding the people who are willing to listen and not just talk.
My family has been amazing. They obviously don’t understand every aspect because I am the first one to go through infertility, but my sister has probably been my biggest supporter. She’s seen friends go through it and she’ll send me little gifts when I’m going through egg retrieval and she’s always checking in. I’ve also had some friends go through their own infertility journey and they have been a great support system.
There are also some friends who have not gone through it who reach out on occasion, but it often feels like some people just don’t know what to say. And so, they don’t say anything. Many of my closest friends aren’t married and don’t have kids and they are even more unsure of what is the right thing to do or say.
I’ve also started to see a therapist, which has been super helpful, and my in-laws have been great. All four of their kids have gone through infertility and three of us have gone through IVF, specifically.
I think I’m open about our journey and struggles, and I think I try to portray that I’m strong. But as much as I want to share, this is all so vulnerable and there is a part of me that doesn’t want to share and so, I don’t share every detail of our journey because of that.
My social media account specifically for our infertility journey has been great to connect with other women who are going through the struggles. However, I do think there are highs and lows that come with social media. For example, there were a lot of people who had transfers in December and January this year and now there are a lot of ‘positive test’ posts right now. I also know that the girls who didn’t get a positive test are probably not posting because it’s overwhelming and I absolutely get it. Our feeds are flooded with all these people moving forward on their infertility journey and I’m standing still, not sure what to post because my journey is paused and I’m not really doing anything. There are some girls that I have connected with that have gotten pregnant, or they have already delivered, and they’ve now gone through this whole process and I’m still at square one. I’m still at the start…they’ve crossed the finish line.”
GUARDING YOUR HEART: THE EMOTIONAL BURDEN
“Physically, I felt the hormones because there are a lot of them, but I only felt a little bloating after my stimulation drugs, and I didn’t have severe symptoms after my egg retrieval. I actually felt like I could work out the day after my egg retrieval. I know that’s not everyone’s story, but I didn’t experience many physical side effects.
The emotional piece of infertility has been super hard on me. I’ve had anxiety and depression prior to our infertility struggles and adding this is very hard emotionally. I haven’t been to a baby shower in two years, and I treat my pregnant friends a little bit differently depending on how they approach their pregnancy with me. That’s not fair but it’s how I can guard my heart.
I find myself always thinking ahead to things like the holidays. Every Christmas is hard and each year that passes gets even harder. This year, we’ll have a new niece and that will be incredibly hard on me if I’m not pregnant. I’m already mentally preparing and thinking about whether we plan a trip for Christmas if we aren’t pregnant by September. When you think about what your life will look like going forward if you aren’t pregnant, it takes an emotional toll. It’s not fair to myself and I probably shouldn’t do it but it’s also part of the story. Dealing with the emotional burdens of infertility is part of the whole journey.”
“Be patient, especially with yourself…It’s also ok to hide out and to tell people that your journey is just that…yours.”
TAKING ANOTHER STEP FORWARD
“We have known that this is a numbers game for us. The more embryos we can produce, the better our odds of having a healthy and viable embryo for transfer.
I was a nanny for years, I always babysat, and everyone would comment that I was going to be such a good mom one day. And now I’m here. I want to be a mom and it’s just not happening. I’ve always dreamed of being a mom and giving my husband a baby. I’ve always envisioned being pregnant and having a family of my own. I don’t think wanting these things is wrong. It’s this dream and vision that keep driving me forward and wanting it so badly that I will exhaust all resources and will try anything to make my vision come to life.”
FOR THOSE WOMEN WALKING THE PATH OF INFERTILITY
“Infertility sucks and it’s ok to admit that it sucks.
It is a freaking hard process. Get your boxing gloves on because it’s a tough and hard fight.
Be patient, especially with yourself. Nothing is ever going to go as planned.
You are going to have grief and allow yourself to feel it because infertility is traumatic. There is going to be trauma left and right and that’s ok.
It’s also ok to hide out and to tell people that your journey is just that…yours.”
Lauren’s journey has continued to develop since we chatted and you can continue to follow Lauren’s journey and her continued support of others battling infertility on Instagram @journeytobabyrazz.