The Costs & Sacrifices of Infertility

Hello there to whoever is reading this. I don’t really know where to begin with our whirlwind of a story because I never thought my family would be in this sort of situation. I guess that is why these funding programs are beneficial, but it has always been hard to ask for help when needed and has taken us a few years to ask. Our family has blossomed and crumbled simultaneously, and we would be forever grateful for anyone’s help, big or small. Please take the time to get to know us by reading our journey below. This does contain sensitive information about our family, so please be mindful and kind.

As a little introduction, my name is Bethany, and my husband is Chad. We started trying to have a family back in 2019. We were and still are young and naïve, and we thought that we would get pregnant right away. It was not happening. Six months went by, and it was time for my annual visit to the OBGYN. I discussed with them that nothing had happened, and the doctors told us with our age and the length of time trying, if we weren’t pregnant yet, something was probably wrong. We got referred to a fertility clinic. For the sake of anonymity, we will call this Fertility Clinic 1 or FC1 for short. Chad and I knew absolutely nothing about infertility, and it was very scary and intimidating to think we might be facing issues ahead. As kids, middle and high school health class always tells you how you can get pregnant immediately and how easy it is, but the other side of the spectrum is not discussed whatsoever, so we were clueless.

The new year of 2020 had arrived, and we had our initial virtual visit with FC1. Chad and I were both super scared and excited. The doctor seemed great and very knowledgeable during our telehealth visit and briefly explained how the clinic operated. Each patient was assigned a nurse with whom they could communicate, and there was a portal where documents and test results could be stored. Simple right? We started out by getting the standards done: blood work for both of us, and a semen analysis for Chad. About 2 weeks later, we were notified that Chad’s sperm count was very low, and their movement wasn’t great either. He had about 0.04% as many sperm as a normal fertile person should have. As a reference, a fertile man can have up to 1 billion per sample, my husband only had 400,000 which still sounds like a lot, but not enough to get me pregnant quickly within the time frame that doctors like to see. We were totally not ready to hear that news. Chad and I both were now very scared and concerned, because we started to go down the rabbit hole of what the hell happens from here, what are our options, how much will this cost, will we ever have a family, how could this happen if we were so young, and it just kept going. The doctor wanted to wait 3 months and do another analysis before starting any kind of real treatment. Due to this possibly being what is called as “male-factor”, they delayed any sort of tests or treatment options for me and we agreed with that plan. After a few months, Chad’s results came back with low sperm counts again and low testosterone. Not really sure what our options were and how to continue, our doctor recommended that Chad get a varicocelectomy. Almost like how some people get varicose veins removed in their legs, well men have a higher chance of having this in their testicles which can cause infertility. The doctor let us know that nothing is a guarantee, but if this surgery works we would be able to conceive naturally. As a preface, going through any sort of infertility is the most stressful, hopeless, and scary time many people have experienced and we are all at the mercy of the doctors that take care of us. We were desperate just like so many other people on this journey and we just trusted the doctor to take care of us and have our best interest at heart. Chad and I decided to give this surgery a go. I had fertility benefits through my insurance at work, but if we had the option to naturally conceive, that would be amazing.

Chad’s Urologist who performed the surgery was located in Maryland. He had a few consults with her before he went down for the surgery and he felt comfortable with the plan. April 2021 comes around and he goes down there for the surgery. Fortunately, our close friend lives about 30 mins from the hospital Chad had to have this surgery at, so Chad went to stay with him while I worked. I was on edge the whole day of Chad’s surgery, just hoping this would bring us one step to becoming parents. I got a call from the surgeon saying the procedure was a success, and they found 11 varicose veins which was a lot compared to normal. I was relieved that everything went well, and that Chad was in good hands with our friend down there. After several days, Chad came back home and took it slow to recover.

Our doctor at home told us it could take 3-6 months before we see any change in sperm number, motility and morphology, so Chad’s analyses were scheduled accordingly. Over the next few months when we started to get the results back, we were shocked that his numbers actually went down to almost nothing. The surgery didn’t work at all and in fact, it made Chad almost sterile. Our doctor said we could work off of the frozen samples that we had, but we felt very misled. Nothing in the surgery papers said this could make Chad sterile, just that the surgery might not increase his sperm count. As well as that, Chad is in severe pain. He now has jolts and intense pain in his groin area where the incision is located. The surgical pain should’ve only lasted a maximum of 3-6 months. It was almost a year post surgery at this point. By now, we were exhausted, frustrated, and in worse shape than just starting fertility treatments because now Chad had no sperm. Our dreams of becoming parents kept dwindling and Chad’s pain kept increasing.

We had more issues with FC1 when it came time for my testing and communication, and we decided it would be best for us to move to a different clinic. We were referred to FC2. When we had our first consultation with the doctor, I instantly knew she was genuine and wasn’t in this field for the money like most other doctors. We voiced our concerns to her about FC1 and she was shocked about how they handled their processes and their patients. We had to go in for baseline testing and the first thing was to test Chad’s sperm. He only had 3. Not 300,000. Not 3 million. Three sperm. And none of them were moving. Also, his pain had increased so much, he started having trouble performing his duties at work. He works for his family’s business in pool plumbing, so putting in the pumps, pipes, and also checking for leaks. It is a lot of manual labor. Every day he came home suffering because of his pain. We weren’t sure if this was normal because at this point it was about a year post surgery. Our new doctor suggested he see a new Urologist associated with FC2’s practice.

At FC2, Chad and I simultaneously were being tested which was great because it made things move a lot quicker. We had to go through IVF because he was not producing any sperm and we were working with his frozen samples from before. I had IVF coverage through insurance for work and it covered $30K. I started to go through the treatment protocols and the testing that was required before starting any major procedure. At this time, Chad was seeing the Urologist. This Urologist was weary of taking Chad in as a patient, because he was not the original Urologist who performed the surgery. He did however note that Chad’s testosterone was very very low, and his FSH was extremely high. This signifies an issue with the testicles. He placed Chad on a medication that is not testosterone, but helps his body to build it up. He also said this might be able to increase sperm. We were shocked that a cheap pill could do this, but the original FC1 doctor pushed us to go for a surgery that really affected Chad and didn’t discuss other options.

Chad’s pain kept on continuing to get worse. It was now to the point where I could hear and feel him get jolts of pain in his sleep and he was skipping on days of work because it became too much to bear. He did not want any sort of painkiller / narcotic medication which he explained to the Urologist. At the next Urologist appointment, Chad was now referred to a special Reproductive Endocrinologist (RE). Chad went to the office, and this RE stated that Chad had nerve damage as a result of the surgery and was officially diagnosed. He recommended physical therapy, and if that didn’t help, injection therapy. Chad went to physical therapy and performed all of his exercises. Nothing seemed to be working. We were getting so worn down from all of the doctor's visits while simultaneously going through IVF.

Going through any kind of infertility is a struggle in a relationship, but adding in nerve damage from a botched surgery made everything so much harder. All we wanted was to have a child - something that seemingly everyone else could do with no problem. After my testing was completed, we had a plan to officially begin IVF. The first month, I started injections and my eggs were retrieved and Chad’s sperm was thawed to use to make embryos. The second month I had a hysteroscopy and a test called an ERA that tells the doctor when to put in the embryo, and the third and *hopefully* last month is when the embryo is implanted in my uterus. I was going to monitoring appointments before work every other day for about 4 months. Even with insurance covering $30K worth of IVF / medications, we paid about $20K out of pocket for medication copays, visit copays, lab copays, procedures not covered, specimen storage and coinsurance. We had some funds to do this, but we could not save any money during this time.

While I’m going to all of these IVF appointments, Chad was bouncing between all of his doctors. He was going to physical therapy which wasn’t working, and checking in with his Urologist and RE. He was placed on different nerve-blocking medications which weren’t giving him relief either. Physical therapy was only doing so much for him as well, so the doctors had to come up with a new plan. We felt so desperate and our relationship was really struggling at this time. There was absolutely no light at the end of the tunnel when it came to Chad’s prognosis, our chance of getting pregnant, and our finances. Fortunately, in May of 2022, one of those things happened and we found out our embryo transfer worked and I was pregnant. Finally! After 3 years at this point of seeing fertility specialists, we were having our miracle IVF baby. It didn’t feel real at all. After the emotional torture we went through, after the violent physical pain Chad faced, and after our bank account took a blow, we finally started our family.

About 2 months after finding out we were pregnant, Chad had the worst bout of pain he ever had. The jolting pain was lasting longer and was more frequent, and his chronic pain at the surgical site was more intense. His physical therapist, RE and Urologist recommended he try the injection treatment. We didn’t really know what else to do, so he went for it. During these injection sessions, Chad would have to go into an OR just like a regular surgical procedure. The medical personnel would guide a needle via ultrasound near Chad’s surgery scar into the nerves and inject a mixture of lidocaine and a steroid. He came back from that appointment red, sweating, practically falling over and in tears. Chad was told by the medical team that the pain could get worse before it gets better, so he roughed it out. Many nights we just sat together crying and praying to God that he would be healed by the time our little bundle arrived. I could see in Chad’s eyes he wanted to give up fighting this pain so many times but there had to be something that someone could do for him. Chad did 3 more rounds of injection therapy and finally had to stop. His pain completely took over and we both agreed the torture wasn’t worth it especially since another therapy yet again did not help him. We felt hopeless and left with so many what ifs. What if we didn’t go to FC1? What if the doctor made a terrible mistake during Chad’s surgery? What if this lasts forever? Nothing was getting answered.

Work became unbearable for Chad. The digging, jackhammering and lifting were too much. In July of 2022, he had to stop working because the manal labor was taking a toll on his body. Chad tried hiding the pain behind a smile, but that slowly started to fade away. Since he worked for his family’s business, he was able to do some pool leaks and equipment runs for the company, but it wasn’t an everyday sort of job. He didn’t quit his job because he still wanted to be available if there was a day where light physical labor was possible, and he didn’t get fired because it’s his family’s business. We still had a decent amount in savings at that time and I was still working so we weren’t super worried. Bills kept coming in from IVF though. $1400 for storage fees, $795 for biopsy, $500 for anesthesia , $35 for each copay and multiply that by approximately 50 visits, and more bills kept on coming and coming. Our savings took a beating. With my job alone, I can pay for my personal bills, our health insurance, groceries, electric and wifi. I don’t make enough to support our family. Worry started to hit us real hard.

It was hard for Chad to do basic things. He couldn’t lift anything more than 10 pounds. The jolts would cause him to fall. The medications had bad side effects even though they were not painkillers. We would have to leave outings with friends because his pain would become so intense, he would get nauseous, throw up and sweat. We could not be intimate at all. He was suffering more and more each day, and I became so anxious because we were going to be parents and nothing was getting better. Chad finally stopped doing injection therapies and physical therapy because it was causing more harm than good. We noticed that he started to develop black and blue bruises on his testicles that extended up to his incision. It seemed like the doctors he went to just kept referring us to other doctors and sending us in circles.

January of 2023 is when we welcomed our beautiful baby boy Leo into this world. Chad and I have never been so happy to become parents to such a wonderful little man. The moment he was born, we both laid there together and cried because of how much we prayed for this moment. I have never been so in love. All of the pain was so worth it. I had a great c-section delivery and recovery. The hospital told us that we had to schedule a pediatrician appointment for the day after we got home just to make sure that Leo was doing well. We were at the hospital from Monday to Thursday then went home. Leo’s pediatrician follow up was on Friday. We hadn’t even been home for more than 12 hours. We got to the pediatrician’s, and the nurse who was checking Leo’s vitals was acting very strange and was silent. Leo’s heart rate and body temperature were a little low. He seemed fine, but the doctor was concerned and didn’t feel comfortable sending us home. We were ill prepared because we thought we were going straight home, but the doctor made us go to the local ER. Meanwhile, Chad and I are both sobbing because our Leo is only 4 days old, and the doctors are making it seem like he isn’t going to live. We get to the ER, and they get us in a room. The staff were struggling to insert IVs into Leo’s arms and legs because he was so tiny. My son was screaming the whole time as the team poked and prodded at him. We were both losing it to hear our baby boy cry. Finally after 4 different medical personnel failed at inserting his IVs, they called the NICU nurse. We were infuriated that this wasn’t the first thing this team would’ve done in the first place. The NICU nurse came in and was trying to make light of the situation, but it made us even more angry. She was training another staff member while dancing and hopping around the room with our 4 day old baby screaming. The other med tech preparing some of the supplies was also not wearing gloves. It was a disaster and a disgrace for being a very well known and reputable hospital. Chad and I sat there anxious and in tears and before I knew it, Chad started seizing. He hasn’t had a seizure in 7 years and it was the stress of Leo screaming and the unprofessional acts of some of the medical personnel that brought it on. I was pulled out of the room by nurses and social workers and he was transported to the trauma room. It didn’t hit me what the hell just happened. Chad didn’t know where we were, why we were at a hospital, and he didn’t know we had the baby at first. His face was covered in blood from biting his tongue while seizing and he was covered in sweat. I called his sister and my mom to come to the hospital because I didn’t know if I could care for a newborn by myself especially after I just had a c-section. Chad was hooked up to IVs in the trauma room to get fluids, and simultaneously Leo was in his room getting a spinal tap to test his spinal fluid for infection. Once my sister-in-law and mom arrived, Chad was transported to another hospital to get checked out. My mom, sister-in-law and myself sat in the room with Leo watching him as he was connected by wires and tubes under his little warmer lamp. My milk came in while we were in the ER and embarrassingly enough it leaked through all of my clothes. My mom had to drive to my house and get me more clothes. I was so anxious and just in fight-or-flight mode that I couldn’t eat, relax, or do anything but keep an eye on my son. A few hours went by and I found out that the team wanted to transport Leo to the hospital in the city because they had more of the equipment he needed and more rooms readily available. I panicked because I didn’t know if I had the strength to be in the city with my newborn baby all by myself. I just wanted Chad. I asked the medical team if they could give me a heads up before the transport team arrived. Chad called me and by some sort of miracle he said he was getting discharged and could come back to the hospital where Leo and I were. Only problem was that he was now not allowed to drive, and neither was I due to the c-section. We arranged for my step-dad to take my car back to my house, mom to pick Chad up from the hospital he was at, and bring him to our house to get clothes and supplies. Our neighbors were going to bring Chad to the hospital we were at. My sister-in-law was sitting with me in the ER room and the transport team showed up with no notice. Chad still wasn’t back yet and I asked if they could wait for him. They told me no and that they could only have 1 parent in the ambulance. I begged them to please let me and Chad go and explained what all just happened in the past few hours. They agreed to let us both ride since neither of us could drive, but they said we only had 10 minutes. Chad was about 20 minutes out. Me and my sister-in-law tried stalling the transport team as long as possible so I didn’t have to make the trip to the city alone. They started getting Leo’s little transport incubator box ready and just as they started to load us up, our neighbor pulled up in the truck with Chad.

Finally we were reunited again, and now traveling in an ambulance to the city. The hospital had a room prepared for Leo in the NICU. Once we got settled, a whole group of doctors and nurses sat with us and asked us if we needed any support. They also got the memo Chad just had a seizure, so they really made sure we felt comfortable and stable. It was the first time all day we knew everything was going to be alright. Since my milk finally came in, I had a few bottles made up. Our nurse for the night told us about a section of rooms down the hallway for NICU parents that were almost like hotel rooms; a room with a bed, TV, and a pump where we could relax for the night. The nurse took my bottles, gave us the room code and said “We get paid to hold, feed, and change the babies all night long. Get some sleep.” Chad and I got the best rest after the worst day of our lives thus far. When we woke up, we walked down the hall to Leo’s room. He was still under the warmer and was still having issues regulating his body temperature. Standard hospital protocol was that he was being treated for sepsis even if he didn’t have it, so he had 3 antibiotics circulating via IV. They also treated him with an antiviral, and sent out the spinal fluid from earlier and some blood and urine for culture testing. Due to this being the protocol, we had to stay for 3 nights until all of the results came back. It was very difficult for us to try and adjust to becoming a family while being in the hospital, but at least the staff at this hospital were helpful and compassionate. Most of the NICU nurses told us from their experience, sometimes babies just have a lower heart rate and temperature, or it could be because Leo was dehydrated. They asked me when my milk came in, and they were positive that Leo was dehydrated due to my milk not coming in until that Friday AFTER we were already admitted to the ER. It took a few more days for Leo to be able to regulate his body temperature, and his heart rate was stable. On Monday, we got the OK for discharge. My mom drove to the city to pick us all up and take us home.

Leo has been doing great since, and we have adjusted to family life. He has gained weight, has a strong heart and has a regular body temperature. It has been nice to have Chad at home with me taking care of Leo, but with all of the hospital bills from me giving birth, Chad having a seizure, and Leo with multiple hospital stays, it is getting overwhelming. We have only a few hundred dollars in our bank account. Chad still cannot work at the family business due to the pain and now his license is suspended for 6 months due to the seizure. We do not qualify for any assistance, because he technically isn’t laid off or fired from his job and with him working half of the year last year, we both made “too much”. Chad’s work doesn’t have any short term disability or paid leave. He has been applying to jobs in the fields that he has knowledge in, but unfortunately many of them require to have an active driver’s license to perform job duties. He is currently in the interview process of several jobs. I still have income, but even when I go back to work I cannot sustain us with just my income. Our mortgage is only $930 for our tiny house, so it isn’t financially beneficial to sell the house because apartments are way more expensive and we have 3 animals. Living with family members is also not an option. I grew up in a very unstable financial and home situation growing up and have trauma from not having a place to call home. We moved 11 times in my childhood, lost 1 house to foreclosure and another to divorce. I just want to keep our house we worked so hard for so my son has stability in his life. We don’t have many valuables to sell, and we live a very simple life. Chad and I ask that if you have the means, please consider even just donating a few dollars to help us pay our medical bills and keep our house. Once we are financially stable, we would like to return the money to those that have donated. We do not believe in free handouts, but we do believe in good karma and helping others when they truly need help.

Thank you for reading this if you did. It means so much to our family.