Patient StoryApr | 17 | 2019
Penny's story: Warrior Princess conquers her feeding struggles
In no uncertain terms, Penny Clark, 3, will tell you what she likes and dislikes when it comes to what appears on her dinner plate. Classics like pizza, pasta and especially chicken nuggets rank high on the list, while mashed potatoes are often accompanied by a wrinkled nose. It’s a dramatic, but welcome difference compared to Penny’s tumultuous first few months of life.
On January 10, 2016, Penny’s mother, Erin Clark, of Methuen, Mass., was MedFlighted to the emergency room of a local Boston hospital. She was 26 weeks pregnant and knew something was wrong. Erin was retaining close to 60 lbs. of water and struggling with diabetes and preeclampsia. For four days, hospital staff kept Penelope, affectionately called Penny, safely inside Erin’s belly until it became obvious that she needed an emergency C-section.
On January 13, 2016, Penny was born a micro preemie at 26 weeks, weighing just 1 lb., 16 oz. and 13” long. She spent the first five months of her life in neonatal intensive care receiving treatment for severe bleeding in her brain and breathing issues and was placed on a nasogastric (NG) feeding tube.
In June 1017, many of her medical issues, except feeding, had stabilized. Penny was discharged from neonatal intensive care. For help with feeding, she came to the Center for Feeding and Nutrition at Mass General for Children (MGfC).
“When I first met Penny, she had a lot of vomiting, reflux and poor weight gain. She was taking in maybe 20 milliliters (ml) of milk at a time and wasn’t waking up for feedings,” said Lauren Fiechtner, MD, MPH, medical director of the Center for Feeding and Nutrition at MGfC. “She had a lot of ups and downs. There were some months when she would make a lot of progress and others when it would be much slower.”
Over the course of a few months, Penny had her NG tube removed. In its place, she received a gastric (G) tube, which helped deliver food directly to her tiny belly. In 2018, her G-tube was also replaced, but this time, with real food. Now a spunky, energetic 3-year-old, Penny loves to nosh on everything that children her age enjoy.
From the start, Erin embraced her new role as caring and devoted mother as she and Penny fought to survive. “I didn’t have my license when Penny was first born, so I would find a way to get to her from Methuen, whether it was by train or by getting a ride from a friend,” said Erin. Other nights, Erin was able to get a bed at the hospital so I could stay with Penny overnight.
“The doctors didn’t think she would ever walk, talk or crawl because of how sick she was when she was born,” said Erin. “I can’t believe how far Penny has come and neither can the doctors. I call her my Warrior Princess because she truly beat the odds.”
After seeing her daughter’s progress and fearless will to live, Erin bestowed the name of Warrior Princess upon Penny. Although, Erin herself is also worthy of such an honor. Since Penny’s birth, Erin has gotten her license and her own apartment and teaches kindergarten in Lowell, Mass.
“If you could bottle Erin and Penny’s resilience and sell it, you could change the world,” said Judy Burrows, MSW, LICSW, of Social Services at MGfC. “Penny had so many needs in terms of night feedings, along with her other medical issues, and Erin never lost her faith in Penny, her incredible love or her temper. She was so responsible, made sure Penny was safe and well taken care of and worked to take time for herself when she needed to. She has a tender, loving core of steel, which she has passed on to Penny in so many ways. With Penny and Erin, their tenacity, laughter and love are arguably the best, most enduring and reliable things they will ever own. We are lucky to know them.”