In an exam room on Warren 11, Julie Blake and her husband, Nate, sat across from Daniel Ryan, MD, a pediatric surgeon at MassGeneral Hospital for Children (MGHfC). Julie was 7 ½ months pregnant with their daughter Lucy, who was diagnosed prenatally with congenital diaphragmatic hernia (CDH). Ryan asked Julie and Nate what they knew about CDH, to which Julie nervously replied, “Everything.” Ryan, sensing the Blake’s anxiety, calmly said, “Really, everything? Then you must know the entire internet.”
Ryan’s witty, but reassuring remark was what Julie and Nate needed to know that they and their soon-to-be newborn were in good hands. Lucy was born in April 2016 with CDH, or a hole in her diaphragm that causes the liver, stomach and intestines to move higher up into the chest and compress the lungs. With CDH, there is a wide spectrum of how well babies do after birth.
“Lucy was diagnosed with CDH at my follow-up 32-week ultrasound. I remember the ultrasound technician telling me what it was, but even as a nurse myself, I didn’t quite understand,” said Julie, of Dresden, Maine. “I just nodded along and held it together until I could call Nate.”
That night, Julie scoured the internet to learn as much as she could about CDH. She was referred to the Fetal Care Program at MGHfC because there was a chance Lucy would need to put on a heart-lung bypass machine after birth. There was no way to tell until after Lucy was born.
“I couldn’t help but read about CDH and read about how other children did, the treatments and how much care they require,” said Julie. “I just remember sitting on the couch, crying, because I didn’t know what would happen.”
Being far from home emphasizes the importance of having a strong support system in place, said Karen Parsons, RN, the nurse coordinator for the Fetal Care Program. “I cannot imagine what it’s like for our families to be so far from home without their usual supports in place,” she said. “When Julie was referred here, I knew right away we would do everything possible to be the support system she and Nate needed during such a stressful time.”
From the first day of consults and appointments to Lucy’s two-week hospital stay after birth, the Blakes found much-needed support in Lucy’s medical team of specialists, neonatologists, surgeons, nurses and administrative staff. After Lucy as born, they also learned that her case of CDH was milder than most.
“Lucy had mild respiratory distress right after she was born, which was a good sign because it wasn’t more severe,” said Ryan, who performed the surgery to close the hole in Lucy’s diaphragm. “She was briefly intubated to ease her respiratory symptoms and then she had surgery at 4 days old. A few days after that, she came off the ventilator.”
In the Neonatal Intensive Care Unit (NICU), where Lucy stayed after surgery, the staff helped find small, meaningful ways help the Blakes bond with their daughter. “We are a family-centered unit, which means we care for the family just as much as the baby,” said Kate Breen, RN, a nurse who cared for Lucy in the NICU. “It comes down to something simple, like being that listening ear when the family needs it or having the parents take their baby’s temperature when their baby is too sick to even be held."
Now a happy, giggly 10-month-old, Lucy is meeting and exceeding all of her developmental milestones. The only evidence of her CDH is a barely-visible scar across her left ribs. “Because of the immediate care we received at MGHfC, even just those first few phone calls, we knew we were in great hands,” said Julie. “The entire process was terrifying, but all of the puzzle pieces fell into place. We got exactly what we needed and, more importantly, Lucy got exactly what she needed. We will always be grateful to everyone at MGHfC.”