Introducing Erin Racine Clary

Sheila and I are so thrilled to introduce our daughter, Erin Racine Clary, and to share her story.

The purpose of this blog is to communicate to our friends and family about Erin, and to update them on her progress. We thank everyone from the bottom of our hearts for all of their prayers, words, and support.


Erin was born at Evanston Hospital on Saturday, June 28 at 1:12 pm. While healthy at birth, we had previously received a diagnosis that she had a rare congenital heart defect known as Ebstein's Anomaly. The defect was diagnosed during her first ultrasound where we were able to get our initial glimpse of our Erin.

Ebstein's is a defect involving the tricuspid valve. More specifically, from the Children's Hospital Regional Medical Center of Seattle, Washington website:

'Babies with Ebstein's malformation have a tricuspid valve that isn't developed right. This valve is one of the doors in the heart that allows blood to go between the chambers.

The tricuspid valve is the door to the right ventricle. It lets blood flow in one direction and stops leaks in the other direction. The tricuspid valve normally has three flaps or leaflets.

In Ebstein's malformation, one or two of the three flaps don't move normally. Because the tricuspid valve is not formed right, it doesn't work well and blood may leak backwards into the right atrium (upper chamber where the blood comes in) with each heartbeat. This will make the right atrium get too large.

Often times there's also a hole in the septum between the atria called an atrial septal defect. This allows blood without oxygen to be pumped out to the body and can sometimes cause cyanosis.'

Erin has both the tricuspid valve issue, as well as atrial septal defect. In addition, as is commonly associated with Ebstein's, the pulmonary artery isn't properly developed. This is the artery that pumps blood to the lungs. Children with this defect are commonly described as 'blue' babies, due to lack of oxygen.

Surgery is a common option for dealing with Ebstein's. Typically, there is an initial surgery at birth to place a shunt between the pulmonary and aortic arteries to ensure proper blood flow between the two, allowing sufficient blood flow to the lungs. There can be additional surgeries to replace the valve with a pig valve, and to fix the atrial septal defect.