Kevin J. Lederer Life Foundation - 2018 Family Story

Josie and Esten

Family Stories

Josie and Esten


Our journey began a little over four years ago when, just before my 25th birthday, I had emergency open heart surgery to repair an aortic aneurysm and dissection. I was so young, and what happened was so severe that my cardiothoracic surgeon suspected a connective tissue disorder. After consultations with geneticists and cardiologists, what my surgeon suspected was confirmed. I was officially diagnosed with Marfan syndrome. Any pregnancy would be an extreme risk to my health and there was a 50-50 chance our children could inherit the disorder. If we wanted children, doctors recommended we create embryos through IVF and have them tested using PGD/PGS before transferring to a surrogate.

The diagnosis and doctor recommendations were overwhelming. I wondered how we would ever make it all happen, and for a while, I just left it where it was, drifting in the background. I had to focus on getting back to who I was before surgery.

In the summer of 2015, we met with our fertility doctor, Dr. Eve Feinberg, for the first time. Esten and I weren't married yet, but our goal was to get a better sense of the process so that when we were ready, we would know what to expect.

We got married in June 2017 and started treatment in January 2018. We have had some ups and downs, but are happy to have five chromosomally normal, Marfan-unaffected embryos ready for a surrogate.

Esten and I are so touched and grateful to be the recipients of the Sophie St. Aubin PGD for Life Grant. We have seen firsthand how a genetic disorder can impact life and hope to prevent our children from inheriting such a devastating disease.

When we found out that the next step was IVF, we thought our dreams were shattered

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Infertility affects 1 in 8 couples. The Life Foundation is a non-profit, all-volunteer organization and donations directly support providing patient education and grants to those struggling with infertility.