Pharaoh's story: Tiny but mighty
Sep 19, 2018, 2:58:00 PM CDT Sep 21, 2018, 12:16:15 PM CDT

Pharaoh's story: Tiny but mighty

Baby born 16 weeks early thrives after life-saving care

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Cherish loves rolling trucks on the ground with her toddler and singing "You Are My Sunshine" to him. When Pharaoh was born, she didn't know if these moments would ever be possible.

"After birth, we were taking it hour by hour," Cherish says. "There was a 10 percent chance he would survive."

Pharaoh in NICU

A surprise delivery

At 24 weeks pregnant, Cherish visited her obstetrician for a routine checkup. Her baby boy seemed to be right on track. Only hours later, she went into labor.

"It was just a blur," Cherish says. "I was scared but calm, not really registering what was happening."

Pharaoh was born weighing 1.5 pounds and measuring 13 inches long. His lungs were not fully developed, so he was placed on a ventilator to help with his breathing, required medications to support his blood pressure and had to have nutrition via an IV. He also required multiple blood transfusions.

Life-saving care

At 5 weeks old, Pharaoh had a brain bleed and a blood clot formed, causing hydrocephalus – fluid collecting in normally small sacs within the brain. He needed a pediatric neurosurgeon and was transferred to the Neonatal Intensive Care Unit at Children's Medical Center in Dallas, a Level IV NICU which provides the highest level of care.

"I liked the first hospital where he was born, but when we walked into Children's, I knew right away I wanted to stay there," Cherish says. "The way all of the staff communicated with me and the resources and equipment that the other facility didn't have made such a difference."

Since the protein level in the fluid was too high for a regular shunt, Pharaoh underwent surgery for a reservoir, a drainage tube to decrease the fluid in the sacs in his brain. In his first month at Children's Health℠, Pharaoh was taken off the ventilator and stayed on a machine that gave him pressure at the nose to help him breathe.

Pharaoh in Neonatal Intensive Care Unit

Tough decisions

During the next several months, Pharaoh had ups and downs. Cherish says that every decision she had to make throughout that time was hard, but the NICU staff helped them get through each day.

Pharaoh at 8 months old

"Families in our NICU have a support team to reduce their stress including social work, child life specialists, care coordinator, chaplain and psychology," says Rashmin Savani, M.D., Director of the Division of Neonatal-Perinatal Medicine at UT Southwestern and Children's Health. "Pharaoh also received occupational and physical therapy from specialists trained in developmental care as well as speech therapy to promote suck, swallow and breathe skills."

At 8 months old, doctors determined that Pharaoh needed a tracheostomy, a tube inserted into the windpipe at the neck to secure his airway and enable breathing. He also needed a gastrostomy tube which is placed in the abdomen to deliver nutrition directly to the stomach.

"The idea of a tracheostomy made me sick to my stomach," Cherish says. "I had nightmares about it. But the nurses were very patient with me and explained it all in detail, reassuring me that it was the best plan for Pharaoh."

The tracheostomy and gastrostomy tube procedures were successful, and Pharaoh was discharged to Our Children's House, a facility offering coordinated, comprehensive services for children with special health care needs. Pharaoh received treatment there for two months while Cherish was educated further about his care, and he went home for the first time at 10 months old. Home health care nurses and therapists visited Pharaoh at home, and he continues to be followed every two weeks by multiple specialists at Children's Health.

Giving back to others

Cherish takes time out of her busy schedule to serve on the NICU Family Advisory Council. She has already counseled a mom who was making the decision for her baby to undergo a tracheostomy.

"When I was in the situation, I shut out everyone," Cherish says. "I know how traumatizing a trach and g-tube were for me, and I feel like it's my duty to help someone else after the care we received."

'The staff went the extra mile'

The care that Cherish talks about today includes moments that were not medical-related but that made a big difference in her baby's life.

Pharaoh with mom

"If I had to leave Pharaoh's room, the Child Life specialist sat with him until I got back," Cherish says. "They really went the extra mile. The nurses would get him tiny shirts to wear, and no matter what time I called, they were kind and thorough in explaining what was going on with him medically. The social worker came by every day to check on us. For a while, I was so worried about Pharaoh that I wasn't eating, and the lady at the front desk had food ready for me."

One of the moments that will stay with Cherish forever is when the music therapist would come by with a ukulele.

"Her music was the first my baby heard," Cherish says. "She played the song that I still sing to him today – You are My Sunshine."

Learn more

The Fetal Neonatal experts at Children's Health provide comprehensive care for any neonatal condition or diagnosis and are dedicated to improving outcomes for the tiniest of patients. Learn more about our program and services.

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Fetal Neonatology, NICU

Childrens Health