Our Story

"There is something wrong with your baby." 

Those are the words no parent ever wants to hear — and we were hearing them. It was 2018, and while we should have been excited to welcome our fifth child into the world, our joy and anticipation turned to fear and anxiety after hearing those words. After hours and then days of extensive testing, our precious baby was diagnosed with HLHS, hypoplastic left heart syndrome. HLHS is a congenital heart defect in which the left side of the heart does not develop correctly, preventing the body from receiving normal blood flow. 

While in utero, our baby would develop normally, but he would not survive in the world without undergoing multiple, difficult surgeries and enduring extensive hospital stays over a period of years. Years. Our dream had turned into a nightmare.

Akiva Leib was born in the early morning on July 31, 2018, and within hours he was transferred to Children’s National. On the second day of this little boy’s life, he underwent a long, arduous, open-heart surgery. For the next three months, Akiva remained in critical condition. Our little fighter was placed on life support four separate times, underwent numerous procedures, and remained surrounded by a maze of tubes and wires. At many points, the doctors were amazed that he was still with us. 

Throughout the ordeal, one of us was always at Akiva's side, watching him fight for his life, holding his hand, cheering him on, and praying for a positive outcome. Meanwhile, the other one was home, keeping our home life as normal as possible, and helping our four other children cope with the drastic changes in their lives, and the constant absence of one parent. We depended on neighbors and friends for some of our most basic needs, and are so appreciative of all that they did.

Then the doctors told us that there was nothing more to do. Akiva was too sick, and his body was shutting down. We spent three agonizing days by his side, holding his hand, playing music for him, and waiting. Waiting until he passed away on October 30. And then came the grief.

There is no manual for losing a child. There are no words to describe the pain. Now we were members of a club, a club we had not chosen to join. An awful club for those who have experienced heartbreak, who have found a way to live through the loss of a child.

While in the hospital, the help and outpouring of love was beyond measure. People knew how to help, what to do. Bring food. Watch the kids. Give presents. But when a child dies, what do you do? There is nothing tangible to offer. No easy words to say. No way to take away the pain.

Through our agony and grief, we wanted to help others, and so we founded Project Akiva. We hope to help other families withstand their losses. Akiva will forever be a part of our family. Will be a part of our hearts. Will shape our children’s lives. We hope that through Project Akiva, he will also impact yours.

Yours Truly,

Yiscah and Ezra Baldinger