Five Losses to Discover Balanced Translocation: Lisa’s Battle with Infertility
“I’m the oldest in my family. I’ll be 34 this year, my younger sister will be 32, and my little brother was born 15 years apart from my sister and me. For a long time, I didn’t want to have children but in 2015, my husband and I were in a car accident, and I had three spine surgeries as a result and my husband had two. During that time, doctors told me I couldn’t get pregnant because it was too dangerous in my condition. My response: ‘don’t tell me what I can and can’t do’. Something changed in me and realized I actually did want kids.”
Once Lisa and her husband were cleared and it was safe for them to try to start having kids naturally, she had a feeling they would struggle. As Lisa grew up, she always knew something was off because she would go an extended time, sometimes nine months without her period. Because of that, she thought there was probably something wrong. So, when she started trying to conceive naturally, she didn’t wait very long to reach out for help. She started trying in April 2019 and her first appointment at a fertility clinic was August 2019. While Lisa and her husband were able to get into a clinic early in their journey, unfortunately the experience at the first clinic was “horrific” and their journey was longer than she even anticipated.
“You’re investing so much of your time, money, and hope into something that’s not guaranteed…I think both of us have felt deep in our souls that we just haven’t been ready to stop trying.”
IT WON’T TAKE MUCH TO ‘REV MY ENGINE’…SO THEY SAID
“Going into our first appointment at the fertility clinic, I didn’t know anything. I had been referred to this first clinic and my in-laws used this same clinic to have their daughter so, I assumed it had to be a great clinic.
It was at our first appointment after having done all our testing that I was initially diagnosed with polycystic ovarian syndrome (PCOS). That didn’t shock me because with my history, I pretty much knew that. The doctor said it wasn’t going to take a lot of gas to ‘rev my engine’ and basically implied that it would be the easiest fix and the easiest thing to get pregnant.
We did a couple of rounds of Letrozole and Clomid with almost no response. The first two cycles got cancelled and at this point, I didn’t know anything and couldn’t understand why this first approach wasn’t working. By the third round, I was getting angry because it felt like we were paying all this money to try the smallest doses of medication only to fail repeatedly, getting nowhere. I started telling the doctors and nurses that we needed to be doing more because I clearly was not responding to the medication we were trying.
ONE LOSS AFTER ANOTHER
“We got pregnant in February 2020, but it was a chemical pregnancy and ended quickly. After adding injections into my protocol, we got pregnant again in March 2020 and I was so naïve and thought this was the pregnancy that was going to stick. It was around our six-week appointment that we learned there was nothing in my uterus and it was a pregnancy of unknown location. Again, I didn’t know anything about an unknown location pregnancy and my hopes had been so high with this pregnancy. I remember lying on the floor sobbing not knowing what to do.
But we tried again. For the next round we did timed intercourse cycles and it was near my birthday in June when we triggered. I remember thinking that because it was my birthday the timing was amazing, and we would definitely get pregnant…and we did. Everything was going better than any of our prior pregnancies, so we thought surely this was going to be the time we got pregnant and stayed pregnant. We announced the pregnancy to everyone and around 11 and half weeks, we got a phone call from my OBGYN saying we needed to come in and that I needed to bring my husband. I knew immediately something had to be wrong.
They found something on the ultrasound, and they weren’t sure what it meant. We were sent to see the high-risk doctor and the visit was a horrific experience. When she came in the room, we still did not know what was going on and she sat on her little stool on wheels and rolled up to us. She didn’t even say her name but instead started by telling us that we could terminate a pregnancy in the State of Florida up until 24 weeks. No ‘Hello’, ‘my name is’, ‘this must be scary for you’ or an explanation of what she was seeing and potential options for us…just you can kill your baby up to 24-weeks.”
MISCARRYING DURING HEIGHT OF COVID
“We ended up losing the baby at 13 and half weeks and it was during the height of COVID when all hospitals stopped doing elective procedures. I had gone to the OBGYN alone for my checkup thinking everything was fine. They started trying to find the heartbeat with the doppler but couldn’t find it but up to this point, I’d never heard a heartbeat from any of my pregnancies, so I didn’t really think anything of it. The doctor decided to check on the ultrasound and that was when we saw that the baby had died, and I couldn’t believe it.
This was the first time I had met with this doctor, and in shock that I had miscarried again, I was crying and kept telling the doctor that I just wanted to leave. The doctor was sitting in the chair next to me making noises and when I looked over, his eyes were red and puffy and at first thought he was fake crying. But then I hear him sobbing, saying ‘I’ve never had to do this before’. I assumed he meant he had never had to tell someone that there was no heartbeat without the spouse present.
To make it worse, because of COVID he wasn’t sure what he could do as far as treating me and supporting me through the miscarriage. I wanted to do the dilation and curettage procedure (D&C) and he said he’d do everything he could to call the hospitals right away. I also contacted the high-risk doctor to see if she had any extra pull at the hospitals to help my situation and she told me I could miscarry at home and to just have a lot of pads and Tylenol. Are you kidding me? I was pushing 14 weeks pregnant and I’m sure it happens, and people miscarry at home but there was a complete disrespect and lack of compassion. I could not believe it.”
DISCOVERING BALANCED TRANSLOCATION
“We ended up doing the D&C a week later and when we tested the baby, we found out that he had something wrong with his chromosomes. That gave us the indication that there might be something wrong with me and/or my husband. It took us five losses to learn I had balanced translocation and I was shocked. Most clinics don’t offer the genetic tests upfront because they take a long time, they are expensive, and because balanced translocation is not something commonly found. I get it but, I had to go through five losses for someone to consider it.
“Infertility is a full time job…you have to be your own advocate, you have to do your own research, and you have to come to the table fully prepared.”
We were devastated with our fifth loss while also so grateful for how he helped us get to this point today where we are waiting to welcome our baby boy in a few months. Had we not gone through that terrible loss, we never would have known about the balanced translocation, and we probably would have kept trying and would have experienced more loss.”
GOING THROUGH YOUR FIRST IVF CYCLE IN THE DARK
“Once we learned about the balanced translocation, my husband and I both agreed that we simply could not risk trying on our own. We knew we would only proceed with IVF and genetic testing because it was the only way we would feel confident. IVF plus genetic testing doesn’t guarantee that you won’t have a miscarriage, but we knew we couldn’t try naturally and just pray that it worked.
We met with the genetic counselor and both the counselor and our fertility doctor said we had about a 50/50 chance of IVF working. Because I also had PCOS, they did think I’d get a lot of embryos and should have a good response to the protocol. At this point, IVF was a new process for us, and I wasn’t very knowledgeable on it just yet. I just understood the general concept of injections and the egg retrieval process.
We started our first cycle in mid-February 2021, and I assumed everything was going well but no one updated me on anything at this clinic. I never saw my doctor at any of the appointments after the initial visit and I only communicated with the nurse. In fact, I don’t think the doctor could have picked me out in a room. Truly. He wasn’t involved and at the time, we didn’t know that didn’t have to be the normal. We went in the day before the egg retrieval was scheduled for our preop work and we still had not been told what to anticipate with the retrieval.
The nurse practitioner seeing us that day looked at the ultrasound and said that from what she could see we could expect the retrieval of three eggs, and we were shocked. What did she mean three? Balanced translocation it is a total numbers game and we needed as many chances as possible because three quarters of those eggs were probably not going to be viable. The nurse practitioner first tried to reassure me that three was a really good number, and then told me that I could cancel the cycle if I wanted. I was alone at the appointment because of COVID restrictions and in my head, I was so lost because I had never done this before. I hadn’t seen many people electively choose to cancel their cycles like this and I kept thinking about all the money we had spent to get to this point.”
A DISAPPOINTING FIRST EGG RETRIEVAL
“My husband and I agreed to go forward with the retrieval and just hoped they were wrong. We went in the next day and the retrieved three eggs, one was mature, but it didn’t fertilize. I immediately requested a meeting with my doctor, and I was livid. I had so many questions: Why had I not been seeing my doctor? Why had no one given me updates along the way? Why did you let me down?
I went back through my records and was checking what my estrogen levels had been throughout the cycle and that alone should have been an indication to my doctor that something wasn’t right. I spent days compiling a six-page letter to organize my thoughts and instead of meeting with me, the doctor sent me a letter dismissing me as a patient. I had taken the time to educate myself and to ask intelligent questions and he took that as me attacking him and accusing him of breaking codes of conduct. What really happened is that we paid a lot of money for a service that we didn’t receive. This doctor didn’t consider my individual treatment plan and diagnosis and put me on a protocol that every first time IVF patient gets in his office.
You see these doctors and they have all these letters after their names, they’re specialists in their area, and they’ve typically been doing this for years. You trust they have your best interest, and they genuinely want to help you. I should believe that you are on my team. At the root of it, this first doctor was quite old, and I really think he was just in it for the money. I don’t think he had any kind of compassion, concern, or drive to help people achieve their goal.”
TURNING TO INSTAGRAM FOR A NEW CLINIC
“The community I have found through Instagram has been life changing. I’ve learned from other’s stories and gotten pieces of information that gave me something to look into, and things I never would have thought of on my own. The information I find is not necessarily scientific but even if it’s a thought someone has posted about a medication, it’s made me aware of specific tests and given me ideas of questions to ask my own doctor.
It's unfortunate that our doctors are specialists, and we want to trust them. But you have to be your own advocate, you have to do your own research, and you have to come to the table fully prepared. The research is a full-time job but in general, dealing with infertility is a full-time job.
“I have learned so much about compassion and kindness from how people have treated us…we have been smothered in love, compassion, and kindness. It’s overwhelming in the best way!”
After the terrible experience with my first clinic, I made a post on Instagram asking for new fertility clinic recommendations in our area. I was put in contact with someone who works at our current clinic and the experience is night and day. At the very first appointment with our new doctor, he had a typed report summarizing all my records and immediately started to question why my previous doctor had done or not done certain things during my last cycle. He brought up and spoke to everything I questioned my previous doctor about and confirmed it was wrong, wrong, and wrong again. I felt validated! I’ve made it my personal mission to help as many women as I can to not use our first fertility clinic and have urged everyone to go anywhere else but there.”
FINDING THE STRENGTH TO KEEP MOVING FORWARD
“I’ll be honest and say that after the loss we had before this pregnancy, I couldn’t be alone. For weeks, I literally had a babysitter every day and would have scary thoughts like driving my car into a tree. I’m sure that the crash of my hormones didn’t help but I was just so sad.
I took a lot of strength from how I recovered from our previous car accident, when after that crash, I was told I would never be able to do the job I currently do ever again. One day after the accident, I just woke up and said, ‘I can’t be a victim’. I couldn’t let what other people told me dictate my life and just accept that this was all I could do. I applied this same mentality to our infertility battle and decided that our desire to have a family would fuel us forward.
We now know what our diagnosis is, and we know what we have to do to get to the end and neither of us would be okay if we didn’t keep trying for our baby. I think both of us have felt deep in our souls that we just haven’t been ready to stop trying.
Prior to starting at our new clinic, we felt like we hadn’t even been able to give IVF its full chance, but I did give myself several months off. I worked out, had fun, and reminded myself what life is about. I worked to make sure that I was happy first because I felt like I couldn’t have success if I wasn’t healthy and happy. I did allow myself to be sad when I felt it but then I’d find something that brought me joy. I would find a little bit of joy in every day and eventually it got easier, and I felt like I can do this again.”
A SUPPORT SYSTEM MADE OF GOLD
“I don’t know if I can talk about the support we have received throughout our journey without crying. We have been so blessed and feel very fortunate because we know what we feel is not the case for everyone. I hear other people’s stories where their own parents don’t understand and say horrible comments and had I not gone through infertility, I probably would have been that person saying something insensitive, like ‘why don’t you just adopt.’ For us, we have been smothered in love, compassion, and kindness. It’s overwhelming in the best way. Even my employer and those that I work with have been so kind, giving me a day off if I needed it, and when something wasn’t going well, they would cheer us on, and bring us food and cards to our house.
I think it’s also helpful that a lot of people in our life have experienced infertility or loss. My mother-in-law went through IVF, my mom suffered several losses, and I have cousins and aunts on both sides of the family who have had losses. My husband has a cousin right now who’s going through infertility, and she is on the opposite end of the spectrum where she doesn’t want to talk about it with anyone. For her, that’s how she wants to handle it, and everyone deals with infertility differently.
Prior to experiencing infertility, if I saw someone upset, I didn’t necessarily know how to comfort them. I have learned so much about compassion and kindness from how people have treated us. I can’t think of a single person in our life who hasn’t supported us in some way. I feel like this baby is everyone’s baby because this baby is so wanted and so loved. People have been there for us in every little way.”
“I would find a little bit of joy in every day…I worked to make sure that I was happy first because I felt like I couldn’t have success if I wasn’t healthy and happy.”
INFERTILITY CONSUMES YOUR EVERY THOUGHT
“The shots are uncomfortable, your body changes with the medication, but infertility is definitely more of an emotional struggle. You’re stressed out constantly because you are doing early morning visits at the doctor to get there before work or to keep it from interfering with your daily schedule, then you’re waiting all day to hear back about the results of your bloodwork, your egg retrieval, your genetic testing…you are constantly waiting and trying to find the mental strength to stay calm through all the waiting. It literally consumes every thought that you have from the minute you wake up to the minute you go to sleep, especially when you’re in the thick of it.
You’re investing so much of your time, money, and hope into something that’s not guaranteed.
Just last week we had our anatomy scan and we had to go back to the same location of the high-risk doctor who we had a terrible experience with. I turned to my husband and asked if he could even believe what we’ve been through? It’s incredible. But every day, you find the strength to keep going because you want something so badly. When do you know it’s time quit? I don’t know the answer to that question, but we just knew we weren’t ready.”
GUILT OVER FINANCIAL RESOURCES
“I feel a lot of guilt about going through the IVF process because I know there are so many people who can’t afford to try everything that we have. We knew we could afford to try a certain number of times because we had set a maximum dollar amount. We knew we could spend up to $75,000 USD and to some people, they couldn’t even imagine being able to afford that or find a way to make it work. There are some individuals struggling to buy Letrozole or Clomid drugs, which are maybe $30/bottle.
I spoke to one girl who was paycheck to paycheck, and she was able to save enough money to try one time. Their doctor was compassionate to their situation, and they tried every medication possible in this one cycle, knowing they only had one chance. I have other friends who know they need IVF, but they can’t afford it. And what do you do in those situations? Here I am crying all over the Internet and I can afford to try again and again and again. I carry so much guilt about that.”
PREGNANCY AFTER INFERTILITY
“The first trimester of this pregnancy was beyond terrifying. I had three different bleeding scares and each time I’d think we were miscarrying again. They’d do an ultrasound, never really find a reason for the bleeding, and tell us me and the baby were okay.
With each week that passes, you start to accept that you’re really pregnant a little bit more, but I really needed to pass the point that we had reached in previous pregnancies. I had to get past the day, and I felt like if we could do that, maybe then I could fully accept that I am pregnant.
That day came and went, and everything has been great. I shockingly felt him kick early around 14 and half weeks and those kicks remind me that he’s in there. Each appointment has gone well, and it lessens my fear a little more each time. I know the fear will never fully go away, but I’ve gone from saying ‘IF the baby makes it, he’ll be due in June’ to just this morning paying the deposit to reserve the location and date for my baby shower. I honestly never thought I’d have a chance to do that.
A baby registry is another thing that people don’t necessarily realize how triggering and challenging it can be after infertility. I have things written down and I know what we want but when I tried to make the actual registry, I sat at my computer for an hour. I couldn’t put a single thing in the cart because I just wasn’t ready yet. After all our loss and all the heartache, it’s hard to accept that our baby boy is really going to be here. Changing your thoughts and words from ‘IF’ to ‘WHEN’ is hard after infertility.
And infertility never leaves you until you decide you’re happy with where your life is. Our baby boy isn’t even born yet and we’re already thinking so far into the future about the timeline for when we can try again. We know we must wait a year before we can try for a second baby and then we think about if we can afford to try again at that time, will we be ready, and can we make it all work again?”
“I know the fear will never fully go away…changing your thoughts and words from ‘IF’ to ‘WHEN’ is hard after infertility.”
IVF TAKES SO MUCH LONGER THAN YOU THINK
“You hear it all the time before you start treatment, but infertility treatment really does take so much longer than you think. It didn’t help that our first doctor said it wasn’t going to take much to ‘rev my engine’ and so I thought the first round would definitely work and we’d be pregnant in three months. Here we are, almost three years later, and we’re just now pregnant.
I’d like to say the money you put into treatment is not shocking because you go in knowing it’s expensive, but when you add it up, you almost can’t believe it. We don’t decorate our house, every wall in our house is basically bare, and we don’t take vacations because every extra penny goes to treatment because it takes much longer than you first anticipated.”
FOR THOSE STILL WALKING THE PATH OF INFERTILITY
“I don’t want to be that person that says ‘don’t give up and just keep going’ because that’s just not realistic for everyone. And I know hearing those words can be really upsetting to people.
I want others to realize they are so much stronger than they think. You have gone through so much and you’ve made it through every day that led you to where you are today. I know there’s no guarantee that you’ll see the light at the end of this tunnel or that you’ll even get to the end of the tunnel. But if you feel like you can keep going than you can do it!
Find those people who will support you through this journey, take a break if you need to…there is nothing wrong with taking a break. There is no right or wrong answer about how or if you keep going. Only you will know what is best for you.
You are important and I know it can be hard to only focus on the future. But don’t forget to live each day between now and the future you are fighting for. There are other things that can bring you happiness and joy and you have to focus on those things, too because those are things that will get you through what feels unbearable.
Remember what you’ve gotten through so far. Remember how strong you are. And remember to take it one day at a time.”
Since talking with Lisa, her story and her family have grown. You can continue to follow Lisa’s journey and see how she continues to uplift and support others battling infertility on Instagram @lisa_c_ellis.
