Caregiving in Action

Mary Guirguis was 20 weeks pregnant when she learned her baby had stopped growing and most likely wouldn't live past birth. Her doctor suggested that she consider terminating the pregnancy, but for Mary and her husband Maged, that wasn't an option. On January 31, 2014, mary gave birth to a baby girl, Marvel, which means "God's Miracle."

For a beautiful moment, Mary forgot that her daughterhad small limbs and malformed organs and that she wasn't supposed to survive. Then reality sunk in. Marvel was alive, but she was in critical condition. She had numerous complications because of her size and lack of development and was in critical condition. Three days after birth, Marvel was transported to the Newborn Intensive Care Unit (NICU) at Cook Children's Medical Center.

When Marvel was just 5 days old, one of her nurses, Kelsey, noticed Mary intently watching over Marvel. She asked Mary if she had held her daughter yet. Mary said she hadn't because she was worried Marvel was too fragile. Kelsey called in a few doctors and nurses who helped Mary hold Marvel for the first time. Overcome with joy and love, Mary cried with her baby in her arms.

Later that day, Mary tried to make a mold of Marvel's hand, but was unsuccessful due to the delicacy of Marvel's limbs. The next day, Kelsey gave Mary a mold of Marvel's hand that she had made without ever being asked.

The nurses dressed Marvel in cute dresses and accessorized her with matching bows, and would put Marvel in a bouncy chair. A Cook Children's chaplain stopped by daily to talk with Mary and pray over Marvel.

Two weeks after Marvel was born, Mary and Maged learned the name for their daughter's disorder, atelosteogenesis type 2. It's a severe disorder of cartilage and bone development that causes infants to have very short arms and legs, as well as a narrow chest. Infants with this disorder are usually stillborn or die shortly after birth due to respiratory failure.

Mary was impressed by the care both she and Marvel received at Cook Children's. While it was hard for her to ever leave Marvel, in those times she would have to go out, she knew Marvel was in good hands. "I could call at any time to check up on her," Mary said. "I was sure if something happened, they would call me."

Two weeks later, Marvel passed away. "Everyone was in the room with me—the family, the doctors and nurses, the chaplain," Mary said. "She looked at me and passed away." Marvel had lived for an entire month.

Throughout this challenging month, the people at Cook Children's were understanding and helpful. They provided grief counseling and a private room for Mary and her family to say goodbye. Cook Children's staff also cut a lock of Marvel's hair, made a mold of her hand and took photographs for Mary. When Mary left the grieving room, Cook Children's took care of everything else.

Mary had been told to consider early termination of the pregnancy, yet Marvel lived a month. Mary had feared she would never be able to hold or dress her daughter, but she did both, and more. Mary thought she would never be able to see her baby, but Cook Children's NICU made it possible for her to stay right by her side day and night.

When Mary later reflected on her daughter's journey at Cook Children's, she realized that Marvel couldn't have had this experience anywhere else, or received the same standard of care.

Mary began looking for ways to get involved at Cook Children's, and when a job to work in Cook Children's International Patient Services program was posted, Mary applied. Many people asked how she can work for a place that holds such painful memories, but Mary doesn't see it that way. "This organization helped me, and now I help it and the people from where I am from."

Mary was a veterinarian in Egypt before moving to the United States, and speaks both Arabic and English. She now works as a family intake coordinator. She helps parents from around the world whose children need highly specialized care and are considering coming to Cook Children's. She also helps translate for those who speak Arabic once they're here. "I am helping them," Mary said, "but I am helping myself first."

Because of Marvel, Mary experienced first-hand the special care and support that Cook Children's extends to each patient and family. The care that continued on during Marvel's brief life, and was reinforced by the cards she received from Cook Children's staff on Marvel's birthday, and the notes saying the nurses remember her baby.

"Marvel was a miracle," Mary said. "She touches people spiritually, and she touches them personally." Marvel did more in one month of life than some people do in a lifetime and her legacy continues. It is because of her that Mary impacts the lives of others each and every day as she helps to fulfill Cook Children's Promise.