Time is fleeting. Ask any parent, grandparent or caretaker – they wish time had a pause button. They wish they could buy more time. For Sarah Thomas, she found herself wishing for more time over and over again with the birth of her first child, Nora.
On a Friday morning, Sarah, then 38 weeks pregnant, felt a sense of doom rush over her body. “Call it mother’s intuition, but I just knew something felt wrong,” said Sarah. What she described as one of the longest days of her life, Sarah and her husband, Montana, started their journey to the Tallahassee Memorial Alexander D. Brickler, MD Women’s Pavilion.
From the moment they entered triage, everything moved at lightening speed. Monitors, assessments, check-ups – all resulting in Sarah finding out her little girl was in fetal distress and needed to come out immediately.
“They knew exactly what to do. They knew that Nora had no more time to lose and needed to be delivered via an emergency C-section,” said Sarah.
What was supposed to be a moment of happy tears and firsts, turned into fear. As Nora was carefully delivered, doctors noticed her pale skin and distended stomach protruding forward.
Before baby Nora was taken away for further testing, Sarah and Montana gave her sweet kisses on the forehead, not knowing if they would ever hold their baby girl again.
“A few hours after Nora was born she was crying and inconsolable, additionally they had completed an abdominal exam and had concerns. Upon examining her further, it was apparent she needed emergent exploratory surgery,” said Jeff Crooms, MD, general surgeon at Tallahassee Memorial HealthCare.
While Sarah was in recovery, the fight had just begun for Nora. The procedure revealed three kinks in her small intestine. Each kink further blocked nutrients from reaching their destinations. If left alone, Nora would starve to death. Additionally, the dead tissue throughout her small intestine posed a threat for infection. The only way to give her a fighting chance was surgery.
Knowing the value of time, Dr. Crooms decided to perform the surgery with the hope of buying Sarah and Montana a day or two with their newborn.
“I faced the decision of ‘do you do anything?’ Even with the surgery, there was a very small chance of survival,” shared Dr. Crooms. “But babies and children are remarkably resilient.”
Upon the surgery’s completion, Nora was taken to recover in the Newborn Intensive Care Unit (NICU).
As a new mom, Sarah laid in bed within the Family Care Unit wishing to see her little girl. Nurses from the NICU made sure to bring Sarah and Montana pictures, showing that Nora was a fighter.
“All I wanted was to hold my baby, but the nurses allowed me to see she was okay. Each report gave us hope,” said Sarah.
The Thomas family prepared for the worse. The clock kept on ticking. But, Nora proved she was a fighter.
A day passed. A week passed. A month passed. Nora kept holding on while in the care of the NICU. She wasn’t ready to let go - Nora was going to make it.
After six weeks of tubes and around the clock care, Nora was ready to be released home. “As a result from losing the majority of her small intestine, Nora gained a condition called Short Bowel Syndrome,” explained Sarah.
Children with short bowel syndrome do not have the ability to properly digest foods through the digestive tract. Instead, Nora received total parenteral nutrition (TPN) as a method of feeding to bypass the gastrointes- tinal tract through her veins using an IV port. However, to survive, Nora had to tolerate eating to some degree. She did just that.
Just happy to have their little girl home, the Thomas family enjoyed spending time with their daughter and adjusting to their new lifestyle. But as Nora reached three months, another battle presented itself. Her liver was failing. “We had been preparing for the possibility of Nora becoming jaundiced and her body rejecting the TPN. We had to find an alternative medicine to supply nutrients,” Montana said.
There were two options presented - get on the liver transplant list or find another way to get Nora the nutrients she needed. “We were packing up to move to Boston. There was a clinical trial happening using a different base within a new nutrient replacement that could save her life. We would have done anything,” said Montana. “But as we packed our bags, we contacted the neonatologists at Tallahassee Memorial HealthCare to see if they could write to the Food and Drug Administration (FDA) and give us special permission to take part in the trial from Tallahassee. They fought for her. Persistence worked and Nora received the medication.”
The liver damage was reversed and she went back to growing inch by inch.
It was this persistence that NICU nurse Jessica Earnshaw, ARNP remembers well about the Thomas family, “I remember feeling incredibly sad when first seeing Nora after her initial surgery - so pale with small pink lips. But because of her proactive parents and many other amazing factors, she is a survivor.”
Fast forward 10 years to today - Nora is a beautiful, active pre-teen with a craving for adventure. Her fighting spirit hasn’t diminished as she continues to battle complications due to short bowel syndrome. Nora has had more than five surgeries for her port and more than 15 hospitalizations within the Tallahassee Memorial Children’s Center. She visits Kids Korner outpatient care each month for blood work. “Since she was a little baby, despite procedures, Nora has always found a way to bring a smile to the people taking care of her. I know she has brightened my day many times. She is as happy as she is tough,” said Tiffany Anderson, ARNP at the Tallahassee Memorial Children’s Center.
While each medical hurdle is a challenge, it is a small price to pay for a full and happy life.
Nora steals more than her parent’s hearts; Dr. Crooms continues to regularly visit the miracle who left a strong impression on him.
“The outcome (of surgery) is not always in our hands. But Nora is a fighter, a remarkable little girl. Because of her situation, I have had other short bowel syndrome patients I have been able to connect to the Thomas family for support. She is truly an angel.”
As each birthday passes, another set of candles grow by one; another reminder of the miracle that continues to grow.
