When our daughter was 11 days old, we got a call from the pediatrician. Her newborn screening results are in, and they indicate she has cystic fibrosis (CF). We knew nothing about the disease but were devastated as soon as we heard the words. A quick internet search told us that Life expectancy for those with the condition is in the 30s or 40s. He will begin medications and airway clearance exercises within a few days to begin fighting the disease.
Despite the fact that CF is a genetic condition, one that we now know we have a 25% chance of passing on to any of our children, we vowed immediately after diagnosis that we would still find a way to give our daughter of a brother. We always planned to have many children and now we have a strong feeling that our daughter will need someone on her team.
Our research revealed that we can choose IVF with genetic testing of embryos to screen for cystic fibrosis. It seemed like an easy choice at the time, because we were going to take that path. But it will be more difficult.
There are several factors that make the choice to pursue IVF more complicated. The first is a positive. As we learned more about CF, we were very grateful to learn that, over the years, genetic modulators was developed. It is predicted that these best in class modulators will dramatically change the outlook of this disease for our daughter and so many living with CF.
We had cautiously optimistic, but realistic, hopes that our daughter would live a full life. But we still watched him spend hours of his life each week on treatments designed to keep his lungs as clear as possible and provide a fistful of medicine for him to take each day.
We still cringed at his coughing all night, knowing there was something hidden in his body that wanted to destroy him from the inside out if we didn’t fight it.
Although we can see how other CF carriers will be able to pass the disease because of the expected medical advances, in the end, we decided that we did not want to put another child through this if we had one. more choice.
And we do have a viable option, but what will the cost be—financially and otherwise? We were among the lucky ones from a financial standpoint—my husband’s insurance provided some coverage for fertility treatment. But we know that the maximum lifetime contribution will quickly disappear with frequent appointments, multiple medications, genetic testing and multiple procedures.
As I sat in the waiting room of the fertility clinic, I overheard another woman talking about the second mortgage they took out to have a child. I saw our savings dwindle and began to wonder how far we would go.
There was also a physical and emotional investment. I saw pictures on social media of babies surrounded by used heart-shaped hormone injection needles and thought they had tried IVF for years to collect that many. Then my containers started filling up with red sharps. There is a strange pain in slowly injecting a 1.5-inch needle filled with thick progesterone into the butt every night for months.
But I think many women who have gone through the process can agree that the physical pain is easier than the emotional toll. Although I’ve always felt that I didn’t have the same right to be emotional about the IVF process—we already have a wonderful child, and I could, for all I know, have another child without fertility treatment—the emotional investment of placing so many things only to receive a call saying that your blood work indicates that it is pointless cannot be measured on a pain assessment chart.
And, of course, the financial, physical and emotional tolls all increase dramatically with the investment of time. Although we had no idea if we would conceive without fertility treatments in the short term—it wasn’t immediate with our daughter—each stage of the IVF process seemed to add months, and I felt the gap in between our daughter and him. potential sibling that continues to grow.
Partly because my husband is an identical twin, we expect our children to be close in age. When we started the process, we knew that with insurance approval, the retrieval process, genetic testing of the embryos, and the transfer process, a six-month timeline would be the best case scenario. And that’s if all those steps went perfectly (they won’t) and if the first move was successful (it wasn’t).
Naively, I thought it would be successful the first time—we’re just doing it for genetic reasons and our “fertility” is fine, right?
As we went through two failed transfers, the timeline kept creeping up. I didn’t think we needed to do a second retrieval, so after all the viable embryos were used up in the first two transfers, it was like we were back to normal.
As the process took us, I thought several times and suggested to my husband that “we should just roll with it,” try without IVF and hopefully the next one will be without CF. But we have already invested a lot in this process and we still don’t want to pass the disease on. In the end, we know that if one of the embryos from the second retrieval is unsuccessful, we will begin to mourn the kind of family we envisioned. On my darkest days, I have.
And then, we got a call from the doctor, a very different tone of voice from the call with our daughter’s diagnosis and the calls after our last two transplants.
The bloodwork is in, and it’s positive. There is joy, of course. But also an overwhelming sense of relief that the process is over (hopefully). We know many people have invested just as much, and many more, and walked away with nothing. And soon we found out that our return rate had doubled: Surprisingly, our embryo had split and we were expecting twin boys.
We don’t know what we would have gotten without this process, if we had decided to try without reproductive assistance. Are we really pregnant? Will they develop CF? Will our daughter have a little brother or a little sister? Were we destined to have these twins or did IVF contribute to the splitting of the embryo?
For me, however, there is no alternate reality. This is the only path we are willing to take. We had our reasons for this choice, and though we could not have imagined it then, I now hold two more reasons in my arms.
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