Benjamin Baldwin The Beat: Ben Baldwin

First post: Feb 21, 2022 Latest post: Mar 17, 2022
Benjamin Lilu was born in China in 2008 where he was diagnosed with multiple and severe heart defects.  He spent the first years of his life in an orphanage in the Lishui where he was well-loved by the Assistant Director of the orphanage.  We started the adoption process in the spring of 2013 and, soon after we started the journey to bring him home, he got very ill.  Through the generosity of Kim and Jane Clement, the ingenuity of the Asst. Director, and the wisdom and care of Save A Child's Heart in Holon, Israel,  Benjamin had two life-saving open-heart surgeries, addressing a hole in his heart and several other defects related to Tetralogy of Fallot. We brought home a miracle.  News story: https://youtu.be/bMulrrhZCqY

A few years ago at UCLA he had a stent placed in his heart to allow blood to flow better to his lungs. He‘s had other surgeries, too, like the one last summer for his vocal cords, and another one for his eardrum a while back. These are more related to something else he has called Cat Eye Syndrome. And every six months he had a full cardiology workup to assess the health of his heart and whether he needed more interventions.

Several months ago we noticed a significant change in his stamina and increased shortness of breath and fatigue. After multiple tests, doctors noted that when he increased his level of activity, his heart rate did not adjust accordingly.  So, on January 5th he underwent a fairly complex heart catheterization during which they attempted a number of procedures attempting to expand his [shunted] pulmonary arteries that have been narrowing and also the artificial conduit that connects the right ventricle to the pulmonary arteries. They anticipated that this second part would be tricky because of the proximity of the coronary artery and they didn’t want the conduit to impinge on it. Unfortunately, there wasn't room to do what needed to be done. In addition, during the procedure, he had a supraventricular tachycardia (SVT) and they had to shock his heart back into an even rhythm. It was determined that he would need to go through open-heart surgery again.

This open-heart surgery will attempt to reconfigure the location of the opening from the right ventricle to the pulmonary arteries in order to reduce the pressure in his right ventricle and open the conduit enough to allow for the proper amount of blood flow. We expect it to be a long procedure with approximately a week of recovery in the cardiothoracic ICU and then 4-6 more weeks of recovery at home.

His surgery is scheduled for this Friday, February 25, 2022. We will make updates during the procedure and during his recovery here on this page. We covet your prayers for our Benjamin for peace for us and him as well as wisdom and skill for the surgeons.

Love, 

Larry and Melissa





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