Riki Graves was already fighting a battle when she found out, at 20-weeks pregnant, that her unborn daughter, whom her and her husband, Chris, planned to name Juliana, had a complex heart condition, with the full and final diagnosis listed as, unbalanced AV canal with severe bivetnricular dysfunction, small arotic arch, severe right AV valve regurgitation, parachute left sided AV valve with regurgitation in heart failure. Juliana would likely need several heart surgeries, and even with the surgeries might not survive.
Riki describes how she felt when she received the devastating diagnosis, “Hearing those words sent a panic through me that, even now, is hard to describe. After the initial diagnosis, my doctor referred us to the Texas Children’s Fetal Center.”
Riki’s journey actually began at 8-weeks pregnant, when she was diagnosed with breast cancer. Riki made the painful choice to pause treatment while still pregnant, fully understanding that it may make her own battle more difficult.
“It was an extremely difficult and highly personal decision. In the end I wanted to provide my daughter with the strongest pregnancy and healthiest beginning to life possible. During that time there was a lot of things out of my control, but with my treatment, I was able to take the reigns, make a decision to provide for my baby,” said Riki.
When Riki presented at the Fetal Center, it appeared that her unborn daughter would likely require three heart surgeries – the Norwood, Glen and Fontan. But, as the pregnancy neared the end it became unclear what surgeries could be expected when Juliana was born.
Christie Moran was the Fetal Center coordinator who cared for the Riki. She developed a special bond with the family, “Mrs. Graves pregnancy was further complicated by the fact she had been diagnosed with breast cancer during this pregnancy. Either diagnosis during pregnancy can be challenging to manage but the combination made Riki’s case very unique. I felt very privileged to help guide them through this pregnancy, to provide information, to give support and to offer hope.”
Riki’s team of doctors at the Fetal Center continued to monitor her pregnancy very closely. Dr. Wesley Lee, co-director Dr. Nancy Ayres, director or non-invasive imaging and fetal cardiology at the Fetal Center, were among the multi-disciplinary team that cared for Riki during her pregnancy.
Juliana was born on April 9, 2014 and, it was determined that her heart was too structurally abnormal and weak to undergo surgery. Juliana was placed on the transplant list on April 21. On April 26, at 17 days old, she received her new heart.
Dr. Jeffrey Heinle, associate chief of Congenital Heart Surgery led the transplant surgery. Juliana’s transplant surgery was a success, and she is recovering smoothly. Since the transplant, Dr. Aamir Jeewa, pediatric cardiologist, has been following Juliana and working with the Graves to provide them with continuous, ongoing care. The Graves family is relocating from Corpus Christie to Houston to be closer to Texas Children’s, and Riki is currently undergoing treatment for her cancer at M.D. Anderson, staying positive and hopeful for the future.
Riki reflects on her time at Texas Children’s, “We made it with the help of the staff of Texas Children’s Hospital. From my maternal-fetal doctor Dr. Ramirez, who was beyond supportive, to our fetal cardiology nurse coordinator Christie Moran, who helped us get settled in Houston, to all of the doctors, fellows and nurses that helped us get through, we can’t thank them enough. They were there for Juliana and my family during the entire process.”
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