Fertility Diary: Coronavirus Put IVF On Hold

History: I’ve had two miscarriages, and was just starting my fourth IVF cycle before the COVID-19 pandemic hit, interrupting our plans. 

Age: 43
Location: San Jose, CA
Occupation: Research Director
Household income: $250,000

My husband and I just got married — I’m 41 and he’s 47. We’ve been talking about starting a family since we got engaged, and when we were on our honeymoon, we decided to start trying as soon as we got home. To our surprise, we get pregnant naturally just five weeks after having my IUD removed. 

Cost: $0. Removing my IUD was covered by my insurance. 

At 11 weeks and five days, I start spotting. I immediately call my OB/GYN and the clinic tells me I’m probably fine, but has me come in for an ultrasound. We’re heartbroken to learn that our baby’s heart has stopped beating. A few hours later, I have an onset of extreme cramping and excessive bleeding. It’s so intense that I just sit on the toilet with red gushing out of me for an hour. Just when I think it’s subsided and I go to lie down, I realize I’ve bled through a pad in under five minutes. This continues for two more hours before my husband rushes me to the ER. 

The on-call OB there confirms that I’ve undergone major trauma and have lost an extreme amount of blood — my iron and hemoglobin levels have dropped to half of what they were in my prenatal blood work. After eight hours at the hospital, there’s still some fetal tissue remaining in my uterus.  They send me home with a prescription of misoprostol — a drug that’s commonly used to help manage miscarriages — to hopefully pass the tissue. I end up needing a second dose of the same drug a few days later to fully empty my uterus. It’s a horrifyingly traumatic experience.  

Cost: $1,000. Most of the costs are for the ER visit, tests, and lab work from my night in the hospital and the weeks following. The misoprostol was not expensive; on average, it’s about $30. After it happens, I keep receiving bills in the mail. This is my first ER experience, and I'm not originally from this country, so it’s all very foreign to me to receive so many bills I’m not expecting. I knew from the get-go I’d have a $250 copay for the ER, but the buck didn’t stop there. 

After five months of trying to conceive without success after the miscarriage, my OB sends me for every test in the fertility handbook and refers us to a reproductive endocrinologist (RE). We test my Follicle Stimulating Hormone (FSH), a hormone that stimulates an ovary to release an egg so I’ll ovulate, and Anti-Mullerian Hormone, which may predict my egg count. While they’re not ideal, they’re also not horrible given my age. At our first and only appointment with this RE, he tells us that our numbers don’t look too bad and recommends we try Intrauterine Insemination (IUI) — the so-called turkey baster method. He says with certainty, “We’ll get you pregnant.” He then turns us over to the staff of nurse practitioners to help me with everything from prescribing drugs to inseminating me. 

Our nurse recommends that we also get on the In Vitro-Fertilization (IVF) waiting list since it’s several months long. I don’t think I need IVF, but she tells me it’s better to be put on the list now and not to need it than to need it and have to wait longer. We’re feeling very hopeful when we began with IUI. 

We do two rounds with Femara, a fertility drug that stimulates the follicles (the fluid-filled sacs on your ovaries that contain immature eggs). For the second, they increased my dosage. We have three follicles and my husband’s sperm are in abundance. The nurse tells us we have a really high probability of twins. 

We get pregnant with one baby from the second IUI, but at my eight-week appointment, during our second ultrasound, we learn that the baby’s heart has stopped beating. I can’t believe this is happening. We had a strong heartbeat last week.

My doctor gives me two options: Having a dilation and curettage (D&C) — a medical procedure where they’d remove the tissue from inside my uterus — or taking misoprostol. I initially ask for the D&C, but my doctor’s schedule can’t accommodate it for over a week, so I opt for the misoprostol. This time, after taking the drug, I have some bad cramping and heavy bleeding for about six hours. 

The week between learning the heartbeat has stopped and finally taking the misoprostol is one of the hardest, knowing I’m walking around with a dead baby inside of me and there’s nothing I can do. This makes me feel even more heartbroken, but also frustrated. Why does this keep happening to us? What can we do now?

Cost: $2,000 for the two IUIs, with the diagnostic tests and follow-up appointments. It could have been more; our insurance has some coverage for fertility assessment and IUIs. 

I received a call from the IVF nurses when I was almost eight weeks pregnant and they told me we were finally at the top of the waiting list, after nearly four months. I thanked them for calling, but told them I was pregnant and didn’t need the spot. A week later, when I discovered our baby’s heartbeat had stopped, I immediately called our IUI nurse to ask if she could get us back on the IVF list. They called me with the first open appointment — a cancellation — while I was in my OB’s office getting my prescription for misoprostol. I hesitated to take the appointment because I was having a miscarriage, but my OB assured me I could wait an extra day to take the misoprostol and should take the appointment, especially since the next one on the schedule wasn’t for 6 more weeks.

During this IVF consultation, the doctor tells us our miscarriages are likely due to egg quality, which is causing genetic abnormalities with our babies. Our only option may be to do IVF and genetically test the embryos. She also tells me that, based on my history, we had a 90% probability of having another miscarriage. So we set out on our IVF journey. But we’re still on a long list of people trying to receive IVF from this clinic. It’s the end of June and the earliest they can schedule me for an egg retrieval is the end of October. The months of waiting are painful, knowing that time is slipping away from me and there’s nothing we could do. 

Cost: $408 for the initial consultation. Our insurance explicitly states that it doesn’t cover IVF or fertility drugs. 

My IVF experience does not begin well. My doctor puts me on birth control to control my menstrual cycle. My body doesn’t respond well to this protocol. When I start ovarian stimulation, I have a lead follicle, one much larger than the others. Ideally during ovarian stimulation, you want all the stimulated follicles to grow at the same rate. Once they reach a certain size (usually 15 to 22mm), they release an egg. But my lead follicle is growing faster than the others, which is not ideal. 

As I continued with my stim cycle, that follicle continues to grow and the others remain quite small. I have an ultrasound on days five, seven, eight, and nine, and on the last day the doctor (not my doctor, but one I haven’t worked with much) tells me that “this protocol didn’t work for me and we should cancel my cycle.” The doctor says that if they did do an egg retrieval, because of the lead follicle, I’ll likely only get one egg, and when you're paying $28,000 a cycle, you want more than that. 

I’m infuriated and confused. How did this happen? Why did they let me go nine days and pump my body with $5,000 worth of medication before they decided to cancel? I have so many questions, one of which is, How much is this going to cost me? Hours later, the doctor calls to tell me that she consulted with the other doctors in the practice and they’ve decided it’s best to cancel my cycle and move me to an IUI. I’m so frustrated and tell her that I have a 90% chance of having another miscarriage this way. She says she didn’t realize that, but I assure her it was in my chart and they never should have made that recommendation for me.

Cost: $7,000 for the first, canceled cycle, clinic costs, and medication. Birth control was free. 

Our second cycle is better from the start. They use my natural cycle, no birth control. Leading up to the IVF cycle, I’m put on estrogen patches to prime my cycle before stimulation (this is called “estrogen priming.”). When I start my stim cycle, I don’t have a lead follicle. This cycle is far less stressful than the first. I’m able to see my own doctor for most of the appointments, compared to the first time when I saw four different doctors during the cycle. We retrieve five eggs, but only one of those is fertilized and it did not become a blastocyst, an embryo at the stage when it’s ready for genetic testing and implantation in the uterus. I’m left heartbroken again and I’m not sure where to turn. We budgeted to do one cycle of IVF, and we’re now in much deeper than we planned. I don’t want to give up, though. 

We talk to my doctor about doing one more cycle. She recommends a different protocol and says the nurses will be in touch to set it up. However, the call I receive from a nurse is not to schedule my next egg retrieval. The nurse says she’s calling to prep me for an embryo transfer. I burst into tears and tell her that I don’t have anything to transfer and she’s supposed to be setting me up for another egg retrieval. It’s at this moment I decide I need a change. I love my doctor, but I’m never guaranteed I’ll see her and my list of frustrations with the clinic continues to grow.

Cost: $17,500 for the second cycle, including the egg retrieval and medication 

I research all of the fertility clinics in the Bay Area and finally settle on one called CCRM Fertility. I call to make an appointment, prepared to have to wait many months, but to my surprise they get us in the following week. I’m shocked and frustrated that I didn’t immediately turn to them when we were delayed at our first clinic. 

Our first appointment with our doctor is wonderful. She spends more than an hour with us, talking through a protocol that she feels will work for us, quoting research studies, and explaining every detail. Because of my age, she recommends  minimal-stimulation IVF (known as mini-IVF), which involves treatment with a lower dose of stimulating drugs. That’s because she says some research shows that older women do not produce more follicles with higher doses of medication. I’m the perfect example of this and I’m thrilled to see we’re using a completely different approach. She also says based on our history that we may not get a healthy embryo with one more cycle, and we’ll need to go into this planning to do multiple cycles. I’m instantly afraid, knowing we won’t be able to afford multiple cycles. But luckily this clinic offers payment packages for multiple cycles. The first visit, we also meet with a nurse to establish all of the initial testing we’ll need, and meet with a financial adviser to talk about the costs. My husband and I leave the first appointment at the new clinic feeling hopeful. 

Cost: $350 for the initial consult.

Our doctor requests a number of tests before we began our next IVF. I go in for bloodwork and discover I had to give 27 tubes of blood. That’s… a lot. In addition to the standard tests, she orders a few others which haven’t been done before, including a recurrent pregnancy loss test (which fortunately comes back negative). Next, I’m scheduled to start my next cycle. Leading up to the stimulation, I use estrogen patches again, but this time we add an antagonist medication called cetrotide to suppress my follicles. Then, once my cycle begins, I start a course of follicle-stimulating drugs, including Clomid and Menopur which are a mixture of FSH and luteinizing hormone. I’m also injected with omnitrope, which has shown to help improve egg quality.

For the mini-IVF protocol we decided to go with, I was anticipating far less medication, but there’s still quite a bit (including Clomid, Menopur, and Omnitrope). We end up retrieving five eggs. I’m thrilled to see we can get the same number of eggs with less medication. Unfortunately, only one of those five eggs is fertilized. Thus begins my endless research on how to improve fertilization rates. The single early embryo is frozen on day one and we’ll wait until the completion of three cycles to grow our embryos and have them biopsied for genetic testing.

Cost: $15,800 for the first installment of our three-cycle package, plus medication for one cycle.

On March 17, the American Society of Reproductive Medicine issues guidance to fertility clinics to suspend all treatment including IVF egg retrievals and embryo transfers amidst concern for the COVID-19 pandemic. 

I’m one of the few people that’s allowed to continue since I’m currently priming for my next retrieval. The clinic is operating with minimal staff, but everyone is up to speed on my case and my situation. My doctor and I discuss a few things we’ll do differently this time to try and improve our fertilization chances including Physiological Intracytoplasmic Sperm Injection, which involves analyzing sperm and injecting it into an egg with an added special enzyme that increases chances of fertilization, and a calcium ionophore solution. I’ve heard other mothers have had success with this solution, so I try it. The thing is, I understand there’s a chance it might actually hurt the cycle and cause the eggs not to be fertilized at all. They made us sign a waiver to use it. 

I go in for two monitoring appointments. In the first appointment, my hormone levels are elevated and I have an ovarian cyst. Initially I’m not too concerned because this has happened once before. Then, when my cycle started my hormone levels dropped to normal. But this time is different. 

When I go in for a second monitoring appointment when my cycle begins, my estrogen levels are through the roof and they’re unable to start stimulation. The cyst caused the elevated estrogen levels, which they say will interfere with the fertility drugs and keep me from responding well to the stimulation.

This is heartbreaking because it now means I’ll be on hiatus with my next cycle since all new treatments are suspended due to COVID-19. The nearly two-month delay is incredibly frustrating. At age 43, I don’t have time to waste. It feels like it’s just slipping by, and I have no idea how long we’ll have to wait. 

Cost: $680 for medication.

During the delay, I stay in close contact with the clinic. My doctor tells me to check back weekly. Finally, in May, she says I can resume IVF.

Now, I’m one of very few time-sensitive cases that are allowed to come into the clinic. It’s the one time in this entire journey that my age is working for me! The clinic institutes many safety measures like temperature checks and social distancing, so I feel safe going in again. I also have to get a COVID-19 test prior to my retrieval. While having the extremely long Q-tip stuck up my nose is unpleasant, at least it’s quick. I have my negative result within 12 hours. 

This cycle we retrieve four eggs and for the first time ever… And all four eggs are fertilized! We’re over the moon. We finally feel like things are looking up. We now have five early embryos frozen, and we’ll do one more cycle soon. Then, we’ll be able to grow our embryos and pray a few are genetically normal.

Cost: $22,100 for our second installment and medication for the cycle.

Total cost: $66,838

Reflection: When we set out on this IVF journey, I was certain we would only need one cycle. Was I ever wrong.

It's been challenging to go through this during the pandemic. I thought I’d be having a baby in March 2019. So to be told in March 2020 that everything had to be put on hold was very frustrating. I knew once we resumed treatment, I would have several months of procedures to go, so the delay was just pushing things back even further. As it stands now, I’ll be 44 by the time a baby is born. 

An it's not just me. Aside from the devastating loss of life and jobs, the pandemic has put so many fertility journeys on hold. I know I’m not alone and I'm relieved that everyone is beginning to resume treatment. I’m grateful my family and I have stayed healthy, but feel sad for all those impacted. 

COVID-19 hasn't really changed the way I think of my child's future, but it's made me be super careful. We haven't seen any friends in three months, we do all of our shopping online, I haven't been in a store since February. I've learned to be fully functional without leaving home unless it's to go to the clinic. That's probably the biggest change. I’m also worried I’ll be forced to go back to the office before I'm finished treatment, and that terrifies me. I can fully do my job from home, and I know going back in would stress me out. I can’t afford to get sick. The setback of falling ill in the middle of treatment would hurt — time is precious. We can never get time back.

If I’ve learned anything about IVF, it’s that it doesn’t guarantee you a baby. It’s been a long road, but we are hopeful. We are grateful for our fertility clinic and the level of care they’ve provided us with during this surreal time. We pray that at the end of our upcoming fifth cycle, we’ll have a healthy embryo that leads to a healthy baby.