Our first due date was supposed to be in June of 2019. We had been dreaming of a family and were really, really excited when we found out we were pregnant. Our 8-week ultrasound looked good and the doctor told us our baby was strong.

After we found out we were expecting, we did genetic testing through the Sarnoff Center for Jewish Genetics. This testing revealed that we both carried the genetic marker for a FTK Disorder, specifically Walker Warburg Syndrome (WWS) which is characterized by poor development of brain, muscle, and eyes with an expected life expectancy of 1-3 years. If you remember from HS Biology class, carriers have a 1 in 4 chance of having a child with the disease.

We were 13 weeks in and after several ultrasounds in which our doctors observed abnormal brain development, many conversations with different genetic counselors, a CVS procedure, and too many weeks of waiting, we found out that both of us had passed our recessive genes to our child. Based on this information and several consultations with genetic counselors, we decided to terminate the pregnancy. We were heartbroken.

The next Mother’s Day weekend, we discovered we were pregnant again. But after many weeks of testing, our doctors explained that what we had discovered was a very early pregnancy that would not come to term. It was a chemical pregnancy and after a few days it was gone. That’s when we turned to IVF.

Our genetic counselor and a few colleagues recommended we work with a specific doctor at the Fertility Centers of Illinois. Our IVF doctor explained that we could test our embryos for WWS to make sure our children were safe and healthy. IVF felt like the most compassionate choice…little did we know the roller coaster we were about to embark upon. Our first round of IVF was covered by insurance. However, our insurance would not cover the genetic testing we desperately needed. Our first round of embryo testing was generously covered by our genetic counselor organization. But after weeks of painful waiting, we discovered that none of our embryos were viable. We would have to try again. Our doctor gave us a new protocol for a second round of IVF treatment, but this round of testing would not be covered. Thousands of dollars later, we discovered we had two viable embryos! We were riding high…until we learned that if we hoped for more that one child, we would need to try a third round of IVF. The prospect of more needles, medications, weeks of waiting, and seemingly insurmountable medical bills was over whelming. We were so grateful to learn that that Chicago Coalition for Family Building would help us cover some of the costs of this third try. We are about to send more embryos for genetic testing and our fingers are crossed!

Scott and Ma’ayan are recipients of the Path to Parenthood Grant from Jewish United Fund – Chicago and welcomed Yair to the world in 2021!