With Faith and Science:
Our Pre-Implantation Genetics Diagnosis Experience
by Marina Ravelo (pedro and marino ravelo live in Chicago area)
On November 26, 2005 the world welcomed Fabian Ravelo, who weighed in at 7 lbs., 9 oz., and was 21 inches long. After two long and emotional years, we had Ivan’s matched sibling donor!
In November 2003, we got the call we had been waiting for: our mutations had been identified. We were able to proceed with Preimplantation Genetics Diagnosis (PGD). I immediately contacted my husband Pedro’s insurance company and mine. Illinois is one of the states that covers in-vitro fertilization (IVF). We were both initially denied because we were not infertile and PGD was not deemed to be medically necessary. Pedro’s company covered IVF for infertile couples, but not PGD. We wrote a letter explaining that we already had one child who was affected by FA and that the combination of IVF and PGD would almost guarantee that we could have a healthy child. After a couple of months, the insurance company agreed to extend benefits to us for the PGD and IVF. After the insurance was approved, we were referred to a prestigious Chicago hospital and quickly made an appointment to start the process. We explained that we wanted to have a healthy baby who could also become Ivan’s donor. We were only the second family they had helped using PGD. That should have been a red flag to us, but we were assured that they were a great IVF group. In July that year, I started my hormone shots and produced about 13 eggs— not a great amount, but good enough. The embryos were biopsied, and we were told that we had three perfect matches. I thought I was dreaming when I heard that. It seemed too good to be true. We transferred two of the three. As I sat on the table, already imagining the babies growing inside of me, the lab technician came in and gave me the lab report. The report clearly read “no FA, but HLA status could not be confirmed.” I almost fainted. They had implanted two embryos that were not known to be matches! I could not believe how they could have gotten it wrong, since everyone at the clinic knew how crucial it was to have the embryos disease-free and HLA matched. They apologized, but all I could think of was that, if these embryos took, I could be pregnant with healthy twins who may not be able to help Ivan—and that I would not be able to try again until next year. In the end, these eggs did not produce a pregnancy. I was reassured that this would not happen again and that they would be careful next time. I truly believed they wanted to help us, so we continued with them. We tried again in September and in December, but had no luck. We were ready to continue, when I got a call from the IVF doctor. He wanted us to succeed and, since we had tried three times already with his clinic, he thought maybe we should seek another clinic. We agreed. I called the Reproductive Genetics Institute (RGI) in Chicago. They were local, and all of the testing would be done in-house. We walked in with little hope, but were willing to try again. How could I not do everything possible to help Ivan? I had to keep trying. RGI did things a little differently, from the testing of the embryos and adjusting of my medication. I started again in February 2005 and produced 20 eggs, the most I had produced. From the 20 eggs, 15 embryos were created. From those 15, only one was a perfect match. But there was a slight problem. The embryo was not growing at the pace the doctors would have liked. I began to cry. I was so sure this was a bust again. However, RGI still seemed optimistic. They transferred the one embryo and, 10 days later, I got the call I had been waiting for. I was pregnant, finally! We ended up about $15,000 in debt even with the help of insurance, but it was worth every penny. The road seemed endless. I tried so many things to help me get pregnant. I took up yoga to stay calm and focused through the rigorous shots and doctor appointments. I started eating organic food and had acupuncture one during cycles. I don’t know if it helped in getting me pregnant, but I felt a little more in control. In the end, what I got for my hard work and perseverance was a beautiful healthy boy, the only person who could save Ivan’s life!