2022 St. Louis Congenital Heart Walk

Super Ollie

Ollie's Story

Ollie was born at 11:20pm on October 6th, 2021 at Missouri Baptist Medical Center. Within minutes of delivery everyone in the room knew something was wrong. He was quickly taken away and transferred to the Cardiac Intensive Care Unit at St. Louis Children's Hospital. 

He was then diagnosed with a rare and critical congenital heart defect - Infracardiac Total Anomalous Pulmonary Venous Return with obstruction. In this condition, the 4 pulmonary veins that carry oxygen-rich (red) blood to the heart from the lungs aren’t connected correctly. Normally these blood vessels should be connected to left chamber of the heart. Instead Ollie's veins were connected to his liver.

We were told that he was one of the sickest babies that they had on the floor. His percentages of making it to surgery, out of surgey, and recovering from surgery were fairly low.

Ollie was 12 hours old when he was placed on ECMO, the highest level of life support. This machine pumped out Ollie's blood, infused it with oxygen, removed carbon dioxide, and pumped the blood back into his body.

On October 8th at 10:00am they wheeled Ollie down to the operating room. His open heart surgery lasted around 11 hours. Ollie’s chest remained open after surgery for 7 days before they were able to close him.

He spent his first 5 weeks of life in The Heart Center at St. Louis Children’s Hospital. Since then he has had 3 Cardiac Catheterizations to balloon veins and place stents and has ended up in the CICU twice with viral infections.

Many people have asked how his heart condition was not picked up prior to birth. TAPVR is not commonly detected during pregnancy. It is hard for doctors to see the pulmonary veins on prenatal screenings due to low blood flow to the lungs before a baby is born.

Ollie now battles Pulmonary Hypertension as a result of his CHD. Pulmonary Hypertension is simply high pressure in the lungs. This is a rare and progressive disease which we are currently managing by medicines that relax and promote growth of the blood vessels in the lungs and ballooning his veins thru Cardiac Cath’s. Ollie is followed extremely close by the cardiology team at Children’s. 

We owe The Heart Center Team at Children’s the world. Dr. Pirooz Eghtesady is by far the most brilliant and talented man I have ever met. He is the surgeon who preformed Ollie’s lifesaving operation. Dr. Jacob Miller is the surgeon who successfully placed Ollie on ECMO. Both surgeons make it a point to stop by and see Ollie every time we are inpatient. Dr. Manish Aggarwal is Ollie’s current Cardiologist with NP Andrea Drussa and although I cry to them multiple times per month we are so thankful we are under their care. The entire team truely loves Ollie as if he were their own.

Please join us for the 2022 St. Louis Congenital Heart Walk!

 

Our Congenital Heart Walk includes family-friendly activities, music, entertainment, refreshments, peace and remembrance, research remarks, acknowledgements, and our Walk! Join us as we gather together to support The Children’s Heart Foundation’s mission of funding the most promising congenital heart defect research.


Activities Begin:   October 30, 2022 at 8:30 am
Remarks & Kickoff:   10:00 am
Location:   Forest Park Upper Muny
, 11 Theatre Drive, St. Louis, MO


Thank you in advance for your support!



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