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Sadie Rene

Ebstein's Anomaly, surgery in the very near future


When Sadie’s mother was 7 months pregnant, she was given the news about Sadie’s heart. After many many ultrasounds we were told Sadie had a less than 1% chance of surviving after birth.

I’ll never forget the sound of the helicopter right outside the window when Sadie was being born. There were 15 people in the delivery room: 1 doctor and his 2 nurses, 4 NICU nurses, 4 helicopter crew members, my sister and her husband, my mom and I.

When Sadie arrived you could have heard a pen drop in that room! We did not hear a cry for what seemed like a life time, but finally after about 2 minutes we heard a squeal! They held her up for us to see and then off to the NICU they all ran. We didn’t know if they were going to air lift her to Le Bonheur downtown or if she was going to make it at all.

We waited for over an hour before the pediatric cardiologist came out of the NICU to give us a picture of her (all hooked up to leads and IVs). He told us that she was stable and did not need to be transported downtown. After spending a week in the NICU she got to come home!

We have been following up with Dr. Vigay Jashi for regular visits to monitor her condition. She has been on a diuretic for the fluid build-up around her heart and lungs but it didn’t seem to help any so she is no longer on it. She takes half of an 81mg baby aspirin each day and is now on Trileptal every day after having a seizure back in January 2010. They are unsure of what caused the seizure but because of it, her cardiologist thinks it is best to go ahead and get her surgery done to hopefully prevent another episode in the future. We have been SO lucky she has made it this far and we pray our little miracle pulls through her first and hopefully her only heart surgery.

— Candice and Jason, Sadie's Aunt and Uncle (Memphis, TN)


This article was last updated on March 14, 2010

  • Born: January 8, 2008
  • Diagnosis: Ebstein’s anomaly, also called Ebstein’s malformation, is a heart defect in which the tricuspid valve is abnormally formed and placed lower than normal in the right ventricle. The tricuspid valve normally has three “flaps” or leaflets. In Ebstein’s anomaly, one or two of the three leaflets are stuck to the wall of the heart and don’t move normally. The valve is lower than normal in the right ventricle. (Source: AHA website.)
  • Treatment: There are several different operations have been used in patients with Ebstein’s anomaly. The most common involves a repair of the tricuspid valve. The valve can’t be made normal, but often surgery significantly reduces the amount of leaking. In some cases the tricuspid valve can’t be adequately repaired. Then it’s replaced with an artificial valve. (Source: AHA website.)


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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