Tiny but Mighty
Baby Born 16 Weeks Early Thrives After Life-Saving Care
Cherish Guzman 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 the moments she has with him today would ever be possible.
“After birth, we were taking it hour by hour,” Cherish said. “There was a 10 percent chance he would survive.”
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 said. “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.
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 said. “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 the 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.
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.
“Families in our NICU have a support team to reduce their stress including social work, child life specialists, care coordinator, chaplain and psychology,” said Dr. Rashmin Savani, director of the division of Neonatal-Perinatal Medicine at University of Texas 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 his nutrition directly to the stomach.
“The idea of a tracheostomy made me sick to my stomach, Cherish said. “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. The plan is for Pharaoh’s tracheostomy to be removed next Spring.
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 said. “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.
“If I had to leave Pharaoh’s room, the Child Life specialist sat with him until I got back,” Cherish said. “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 said. “She played the song that I still sing to him today – You are My Sunshine.”