Story of Healing
At 14 weeks pregnant, Sara and Dawson of Avoyelles parish sat anxiously at a local sonogram studio, waiting to find out the gender of their first baby. The surprise they received was not the one they were expecting. Shortly after their appointment, Sara’s obstetrician called her and said the ultrasound technician found something on her sonogram, and she needed to come into the office to have a closer look.
The parents-to-be found out that their baby was a girl, and that their little girl had a big health issue. The baby in utero had an omphalocele, which means that her intestines protrude out of her belly. Sara was referred to a high-risk OB in nearby Lafayette who initially encouraged her to terminate her pregnancy. “The doctor told us that we would lose the baby around 20 weeks if we didn’t terminate ourselves,” remembered Sara. “I was absolutely not going to do that.”
As the baby continued to grow, Sara’s care team discovered yet another problem. The baby had a heart condition, called Tetralogy of Fallot, which is a rare combination of four congenital heart defects. After this discovery, Sara was referred to Maternal Fetal Medicine specialist, Dr. Tabitha Quebedeaux, at Touro in New Orleans. Her high-risk OB in Lafayette feared the omphalocele had grown too large and posed too high a risk for delivery. So that she would be closer to Children’s Hospital New Orleans for the baby’s care, Sara made the decision to deliver her baby at Touro, more than three hours away from her home in Plaucheville, LA.
When she was 36 weeks pregnant in March 2021, Sara began coming to Touro for weekly appointments with Dr. Quebedeaux, and at 38 weeks, Sara, Dawson, and Sara’s parents temporarily moved into a New Orleans hotel to wait for the arrival of their baby girl. Just three days later, Sara’s water broke in the middle of the night. “At around 5:15 am, we walked across the street to Touro and I was put on medicine because my blood pressure was high,” said Sara. “By 7:30 am, she was here! It was all very fast.”
Averly Blake was born on April 27, 2021 via cesarean section. As soon as she was born, doctors wrapped her up, quickly showed her to Sara and Dawson, and took her to the side to begin working on her. Sara was able to hold baby Averly for about ten minutes before she was carefully loaded into an ambulance to be transported to Children’s Hospital New Orleans. Sara was discharged the next day, and immediately went to the Children’s Hospital Neonatal Intensive Care Unit (NICU) to join her daughter. “Dawson was pushing me in the wheelchair, and I remember I was in so much pain,” said Sara. “I didn’t take any pain medication because I wanted to be completely present to hold Averly.” When Sara got to Averly, she had a nasal cannula to help her breathe, and a nasogastric tube or an NG tube to feed her.
Two weeks later in the NICU, Averly coded. She went into cardiac arrest and stopped breathing. Her doctors and nurses had to revive her by using chest compressions and intubated her with an endotracheal tube (ET tube). They then found that she had yet another congenital defect, a diaphragmatic hernia. The presence of these three birth defects – the omphalocele, Tetralogy of Fallot, and the hernia, is a rare condition called Pentology of Cantrell.
By July, Averly’s otolaryngologist, Dr. Joel Jones, and her parents decided that Averly would benefit from the placement of a tracheostomy, or trach, to help her breathe. The trach is a breathing tube placed in the neck, which would replace the ET tube in Averly’s mouth.
“The trach really helped Averly improve,” said Sara. “I could take her out of bed, she could sit up and play. Her hands didn’t need to be tied down to keep her from pulling the ET tube.”
Today, Averly, who NICU staff lovingly call the “queen of the NICU” still has her trach and is awaiting her first surgery. “The care we get from the NICU nurses is the best,” said Sara. “They love Averly as their own.”
Her diaphragmatic hernia will be repaired by her surgeon, with her cardiothoracic surgeon in the operating room as well because her heart is right above the hernia. In the meantime, Averly is reaching all of her milestones effortlessly. She sits up, has two teeth, and has eaten solids. Averly’s doctors are confident that Sara, Dawson, and their beautiful girl will be home for Christmas.