Dr. Janette Strasburger and Dr. Bettina Cuneo were my lifelines when I was pregnant.

I heard Dr. Cuneo speak about pregnancy at a SADS conference. What really stood out to me was the possibility of non-invasively testing a baby for Long QT in utero. I knew I was only a year or two from trying to start a family, so I introduced myself, and was sure to get her contact information.

When I became pregnant, and was meeting with various maternal fetal medicine specialists and genetic counselors, I just wasn’t comfortable with all of the uncertainty. This was a great group of doctors and professionals, but I often felt like the most knowledgeable person in the room when it came to Long QT and pregnancy. So I emailed Dr. Cuneo to get her input. She immediately responded, answered all of my questions, gave me the guidance I was looking for, and connected me to a study in Wisconsin that could detect Long QT in the baby.

Dr. Strasburger met my husband and I in Wisconsin and had the unenviable role of being the one to tell us that the baby did show prolonged QT. She was so compassionate and thorough answering all of our questions. We thought this was the end of our relationship and felt so much more informed heading back to New York.

At upcoming medical appointments: prenatal check-ups, consultations with anesthesia and consultation with pediatrics and the NICU, I was ready to share what I learned. But I didn’t have to. Each of these specialists opened up my file while talking with me and showed me an entire list of background and instructions that Dr. Strasburger had shared with them. Everything from do’s and don’ts with various medications, what to look for regarding the baby’s heart rate, and the use of magnesium or calcium and other clinical implications that fly way above my head.

I finally felt like my care team was prepared for me and my baby. Dr. Strasburger made herself available to my doctors for any questions they had, lending her impressive and rare expertise.

Years later, when I saw Dr. Strasburger at another SADS conference, I teared up a bit as I hugged her and introduced her to my parents. We’re all so grateful to her and Dr. Cuneo—VIPs in the Tolosky-Russom world.

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