I Never Thought I’d Need To Do IVF. Then I Found Out My Baby Could Have Cystic Fibrosis
April 01, 2021BruceDayneWelcome to Refinery29’s Fertility Diaries, where people chronicle their joyous, painful, and sometimes complicated paths to parenthood. Have your own Fertility Diary to share? Contact us, here.
History: I’m 36, and have never had any major physical health concerns in my life. But both my husband and myself are genetic cystic fibrosis carriers, turning our fertility journey into a stressful deluge of tests, shots, and procedures.
Age: 36
Location: New York, NY
Occupation: Designer
Household income: $200,000
October 12, 2020
Annual appointment with OB/GYN
My husband and I have been trying to conceive for about five months — yes, even amid the COVID-19 pandemic — with no luck. At my annual appointment with my OB/GYN, I let her know we’re trying. She recommends we do genetic screening to see if we’re carriers of any genetic diseases. We decided to go ahead with the screening. I don’t have a family history of any serious genetic illnesses, so I’m confident everything will be okay.
Cost: $10 — a co-pay for my annual OB/GYN appointment.
November 9, 2020
We get the genetic screening results
The genetic carrier screening company tells me I’m a carrier of three genetic defects: two have to do with my Ashkenazi Jewish heritage and one is a gene mutation that means I could potentially pass on cystic fibrosis to a future child. Cystic fibrosis is a life-threatening illness that damages the digestive system and lungs. If my future child had CF, their ability to breathe would worsen over time. They may face infertility. They’d have to avoid sharing drinks, and couldn’t even be near other people with CF to avoid infection. I assumed everything would be fine when I agreed to do genetic screening, so learning all this feels like a punch in the gut.
My husband would also have to have a mutation in his cystic fibrosis transmembrane conductance regulator (CFTR) gene for our child to have a chance of having cystic fibrosis, and even if we both carried the gene, my doctor says there’s only a one in four chance the child would have CF. Figuring the odds are in our favor, we keep trying. I even buy some ovulation tests from Stix, in addition to tracking my period through a free app.
Cost: $24. $0 for the genetic screening, because insurance covers the costs, and $24 or ovulation tests.
December 10, 2020
More genetic screening results
We learn my husband is also a CF carrier, which means there’s a 25% chance our future child will have cystic fibrosis. I’m completely gutted. The genetic counselor tells us we have a few options: We can wait until I get pregnant, then test the fetus for CF in utero at 10 weeks and potentially abort. Or we could do in vitro fertilization (IVF) and genetically test the embryo before it’s implanted into my uterus.
My OB/GYN recommends we speak with a reproductive endocrinologist, a specialist in technology such as IVF. The receptionist at the first one I call is incredibly sympathetic and she fast tracks my appointment request.
Cost: $0. My husband’s genetic screening was also totally covered by insurance.
December 21 , 2020
Video visit with my reproductive endocrinologist
We’ve decided to go the IVF route. I suffer from depression and anxiety, and don’t know if I could bear terminating a pregnancy, especially after trying so hard, for so long to get pregnant. Ending the pregnancy wouldn’t be a necessity, but I know it would be the right choice for my husband and me.
In the midst of the holidays and the pandemic, we do a phone call with a genetic counselor who gives us more detail about the process of testing our future embryos for CF (the official term for this testing is a “genetic probe”). They say if we go with their lab, they’ll pay for the genetic probe on up to 12 embryos during our first round of IVF. Our insurance doesn’t work with this lab, so if we have to go back for more testing in a possible second or third round of IVF, it will all be out of pocket —approximately $250 per embryo per round. We decide to take the gamble and go with them.
Cost: $20. The introductory appointment with our RE is $10 with a co-pay, but the actual IVF procedure will cost thousands of dollars more. The genetic counselor call is $10.
January 5 , 2021
Genetic probe prep
My husband and I are walked through the process of creating the genetic probe. In order to get this done, we’ll need to send the lab samples of our DNA and our parents’ DNA. I know I’m lucky that all this is an option for us, but I’m so upset. I wanted conceiving our child to be a private and romantic process but we have to include our parents, doctors, genetic counselors, lab techs — the list goes on. I’m also sick of hearing about how I should be grateful that science even exists. I know it could be worse, but it could also be so much better.
Cost: $0.
March 4, 2021
IVF is underway
Last month, I endured a very painful hysterosalpingogram (HSG) test, during which the doctor inserted dye into my fallopian tubes to make sure there were no blockages. Today, I received a call from the nurse. While the HSG did show that my fallopian tubes are open (yay!), it also revealed an anomaly that might be a polyp in my uterus. This means even more tests — a saline sonogram — since a polyp could interfere with the embryo implantation and I’d have to have it removed.
Luckily, my doctor says this won’t interfere with the next step in the IVF process, so soon, I’ll start taking the required medications, including GONAL-F and Menopur. We’re on track.
About those drugs: I’ve looked at our insurance claims and the pharmacy billed for nearly $16,000. We’re paying just a fraction ourselves; we’re incredibly lucky to have such good health coverage and my heart aches for those who go through this without insurance. I’m trying to stay positive and not to get ahead of myself… But I can’t help wondering if our insurance will cover a second or third round if necessary.
Cost: $225. $190 for IVF medications, and $10 for the bloodwork and ultrasound appointment, $25 co-pay for the HSG test.
March 24, 2021
The testing continues
I’ve been injecting IVF meds into my abdomen daily and nightly for the past few days. Today, I see my doctor for an ultrasound and bloodwork. The doc informs me that everything is looking great and I’m on track for possible embryo retrieval early next week. But we still have to do the saline sonogram to look for problematic polyps. The test, which involves injecting fluid into my uterus and uterine lining, is a lot more uncomfortable than, say, an annual pap smear. After the test, she confirms there’s a polyp on my uterus that will need to have that removed before the IVF implantation. We schedule the surgery for a month out.
Cost: $10, a co-pay for the saline sonogram.
March 29, 2021
Retrieval
I go in for my egg retrieval today, and feel overjoyed afterwards when my doctor tells me they were able to get 14 eggs. Now, we wait to see which ones are healthy enough to survive three days post-retrieval, and which will be screened out during the genetic probe. I’m so excited for what the future holds. Less exciting? Getting my first major bill of the IVF process.
Cost: $1,950
Total cost: $2,239
Reflection: We’re still in the middle of our IVF journey, and have a long way to go: genetic testing on the embryos, polyp removal, implantation. We estimate that the total cost out of pocket for one cycle will be somewhere in the $3,500 range because of our insurance, but time will tell.
This process has been so upsetting and draining, but I realize in all of this how lucky and privileged I am to have good health care and insurance. I trying to focus on the present, and not get myself worked up about future unknowns — how many rounds we’ll need, whether we’ll have multiple viable embryos for future kids…
In the beginning, part of me regretted getting the genetic carrier screening. In the past year, I’ve often wondered, Is more knowledge really a good thing? Could we have conceived naturally and ended up with a healthy child never knowing that we were both carriers? Still, I have made my peace with IVF and in a lot of ways it has brought me and my husband closer together. This journey may not be conventional, but we are lucky to have a great support system in our family and friends. All I can do is keep trying to focus on the positive.
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