It took Karen and her husband, Liam, four years and three heartbreaking pregnancy losses to carry a baby to term. So, when their son, Taran, was born with a birth defect requiring immediate surgery, Karen was determined to do everything in her power to protect him and help him recover, even if it wasn’t how she originally planned.
For Karen, pretty much everything related to her pregnancy and delivery was going the exact opposite of what she imagined it would be. But despite the challenges, there was one thing she could do from day one: pump her milk for her son.
A mother’s milk is both food and medicine for an infant, and helps protect infants from illness and infection. This is especially important for infants like Taran who are medically fragile.
In those early days, when Taran couldn’t eat by mouth, Karen and Liam swabbed his gums and the insides of his cheeks with colostrum and human milk. (This is called human milk oral care.)
“There really wasn’t much else we could do,” remembers Karen. “For the first several days we couldn’t even hold him.”
Preparing for a special delivery
Karen was 14 weeks pregnant when an ultrasound revealed a rare abdominal wall defect called an omphalocele. The baby’s abdomen hadn’t closed properly and a portion of his small intestine protruded into the base of the umbilical cord. Karen transferred her prenatal care to the Center for Fetal Diagnosis & Treatment at Children’s Hospital of Philadelphia (CHOP), where she could deliver within the Hospital’s Garbose Family Special Delivery Unit (SDU).
The SDU is the world’s first birthing center created exclusively for mothers carrying babies with known birth defects. It provides immediate specialized care to infants, many of whom will require surgery.
Because of the size of the omphalocele, Taran was delivered by caesarean section in August 2016 and immediately brought to the Newborn/Infant Intensive Care Unit (N/IICU).
Having a birthing facility onsite also allows breastfeeding specialists from CHOP’s Breastfeeding and Lactation Program to work closely with moms both before and after their babies are born. For babies born with birth defects or those who need to spend time in the N/IICU or CICU, one active thing mothers can do to help their babies is pump breastmilk.
Karen pumped every two to three hours after Taran was born, freezing her milk so it would be available when he needed it. Keeping up a steady schedule of pumping is important to helping moms maintain their milk supply while their baby is hospitalized. Because of Karen’s diligence with her pumping regimen early after delivery, she developed a great milk supply.
Waiting to breastfeed
When Taran was just 3 days old, Holly Hedrick, MD, attending pediatric and fetal surgeon, performed surgery to return the infant’s intestines to his abdomen.
Karen continued to swab Taran’s mouth with pumped milk as he recovered from surgery. Immune components of her milk would be absorbed through his cheeks, which could help protect him from infection. When he was 1 week old and had passed a bowel movement, Taran was cleared to feed by mouth.
Even then, Karen had to wait to breastfeed Taran. He received a combination of oral feeds as well as feeds through a nasogastric (NG) feeding tube so that every milliliter he ingested could be measured carefully.
Finally, 11 days after her son was born, Karen was given the OK to breastfeed Taran. It wasn’t the “peaceful aura surrounding yourself” experience that she had envisioned. Instead, it was a mechanical, multi-stepped process that required Karen to measure how much milk her son consumed by weighing him before and after feedings.
“Beth (Elizabeth Froh, PhD, MS, RN, clinical supervisor of the CHOP Lactation Team and Human Milk Management Center), was there to cheer me on the very first time I nursed Taran in the N/IICU,” Karen says. “I remember being worried about him getting enough and whether I was doing it right.”
Froh taught Karen to detect the subtle difference in chin movement that signaled Taran was swallowing milk rather than simply sucking. Taran also regularly fell asleep while being nursed, so he continued to receive the rest of his meal by bottle or NG tube. Karen felt discouraged, but they made progress.
A learning curve
At 16 days old, Taran was healthy enough to go home but nursing was still a bit of a struggle. Taran didn’t always seem comfortable at the breast and he often fell asleep before finishing a meal. One day, a friend happened to text Karen a photo of her own newborn comfortably using a nursing pillow. Karen positioned Taran the same way on her own nursing pillow and something clicked.
“We both just relaxed and never looked back,” Karen remembers. The lesson that stays with her from those early days of learning to breastfeed was to take all of the help she could get and to keep trying, because something was bound to work.
“It’s a huge learning curve,” she says. “Don’t beat yourself up if you can’t do it on your own. There are a lot of women who have done this before and have had every experience on the planet, so use those resources.”
On the move
Today, Taran is approaching his first birthday and continues to breastfeed. With his height and weight in the 100th percentile, Karen no longer worries about her son getting enough to eat. But breastfeeding guarantees nutrition customized to his needs. And with Taran being an active boy, breastfeeding assures Karen plenty of cuddle time with her son.
“Continuing to nurse Taran as he's gotten older has been especially rewarding,” says Karen. “Since he started crawling, he rarely wants to sit still for even a minute — but nursing guarantees I'll still have several quality snuggle sessions with him every day, which I appreciate even more now that he is usually on the move!”
Originally published July 2017