“We want to prevent families from suffering the lifelong, devastating heartache and grief that we will always carry with us.”
Thirty years have passed since October was designated National Pregnancy and Infant Loss Awareness Month in the United States. Twelve years ago, October 15 was recognized as Remembrance Day, and now grieving parents and their supporters in countries around the world join together to commemorate babies who died during pregnancy, at or soon after birth and during infancy. Some of those babies died of necrotizing enterocolitis (NEC), an unpredictable bowel disease which can take one baby’s life in a matter of hours, and leave another baby hospitalized for months before they succumb to complications of the condition. Still, the babies who do survive NEC often struggle with disabilities for the rest of their lives.
In thirty years, our understanding of NEC and the ways to treat it have not changed significantly. There is no test for NEC, and no drug, vaccine or therapy has been specifically licensed for it. Most victims are born prematurely or medically fragile, and neonatologists, surgeons and researchers still debate how to define and diagnose the disease, which has multiple risk factors. However, it is clear that few parents have heard of NEC before they enter the daunting world of neonatal intensive care units (NICUs) and are forced to learn the language that is part of the care of these exceptionally vulnerable patients.
As Professor David Hackam, a surgeon and NEC expert wrote, NEC is like a phantom menace on steroids for families because it comes out of nowhere and, in many cases, their baby’s condition had been stable when it struck. The punishment for daring to hope that the worst of times are behind them is to be swept up in a maelstrom that, in about a third of cases, leads to preparations for emergency surgery, which a significant proportion of babies never survive, even if they make it to the operating room.
Necrotizing enterocolitis is the most common cause of death between 2 and 8 weeks of life in babies born extremely preterm, and Micah Canvasser was 6 weeks old when he seemed to have overcome most of the obstacles that birth at 27 weeks gestation had put in his way. For the first time since she had given birth to twins, his mother felt lighter. Jennifer thought life in the NICU would end happily-ever-after, with two healthy baby boys going home in just a few weeks. But then Micah shocked everyone when he developed NEC. His family was devastated to see weeks of progress, vanish in mere hours. Micah remained critically ill for months, but somehow, he fought through the exploratory laparotomy, bowel resections, peritoneal dialysis, continuous renal replacement therapy, and constant instability. Micah developed end-stage renal disease and died from his complications of NEC when he was 11 months old.
After years of infertility, Sarah Rose Raab’s parents were thrilled finally to be pregnant, but Sarah was born at 23 weeks and 6 days gestation. Despite being so premature, Sarah thrived, surpassing all her medical team’s expectations for growth and development. She was a great joy to her parents, who lived to hold and care for her. Eventually, her family started to breathe more easily, with caregivers even discussing timelines for her discharge. When she was two months old, Sarah had a normal, good day. She enjoyed kangaroo care with her mom and was dressed up in bows by her nurses for a photo session. That night, Sarah became ill very suddenly. She showed her first signs of illness at midnight, and she died by noon that day.
Morrison Driscoll was born at 24 weeks and on day 22 of his brief life his family thought they were finally starting to see the light at the end of the tunnel. “Everyone was all smiles. The nurses were taking pictures for us,” his mother, Heather, remembers. “We left at 3pm and by 6:30pm we got a call that changed everything.” His parents were sent ahead to another hospital where he would be operated on, but Morrison never arrived. They got back to him just in time for his dad to hold him for the first and last time. By midnight, Morrison was gone.
Guy Ferguson never underwent surgery either. Born at 30 weeks after a traumatic pregnancy and labor, he was significantly smaller than his twin brother and it wasn’t only his mother, Joanne, who was relieved when he appeared to be out of danger at six days old. “If someone had told me when he was born that this is where we’d be today,” his doctor said to her, “I’d have taken their hand off!” Twenty four hours later, he was preparing to move Guy to a hospital where surgeons might have saved him, but his long journey included stopping first at a NICU in another hospital. Surgeons and his mother knew he would not survive another move and an operation, so Guy died in her arms when he was 8 days old.
After eight years of trying to have a baby, Hope’s parents’ dreams came true when her mother, Kari, got pregnant. But at the start of her third trimester, Kari was hospitalized with preeclampsia and put on bedrest. She held on until Hope was delivered at 30 weeks when she had a very good chance of surviving and thriving. At 10 days old, Kari recalls, “We thought we were finally out of the woods and had a sense of relief. At 8 pm that evening we received another call from the NICU and my heart just sank.” Her parents rushed to the hospital and “for the next 10 hours we essentially watched Hope slip away.”
Tom Robyn was born at 32 weeks, and at 20 days old Tom’s twin brother Daniel was well enough to be discharged. Four days later, “Something happened that would change our lives forever,” wrote his mother, Bia. “At six AM, we received a call from the NICU; the doctor told us Tom was heading to surgery. He had developed NEC, a disease we had never heard of.” Tom survived but went on to endure another seven surgical procedures. He was left with only 12cm of small intestine and needed to be fed all his essential nutrients through his veins (total parenteral nutrition or TPN). After months in the hospital, his family was preparing to take him home when his condition changed dramatically and he went into septic shock. Tom’s organs started failing and he passed away when he was 10 months and 11 days old.
On Pregnancy and Infant Loss Remembrance Day, and every day, we honor the memories of Hope, Tom, Guy, Morrison, Sarah, Micah and all the babies who have died after developing necrotizing enterocolitis. Working together, we strive to raise awareness of this lethal disease and the importance of research to understand and treat it. We want to prevent families from suffering the lifelong, devastating heartache and grief that we will always carry with us.
We encourage everyone to light a candle with us in memory of all our babies. Join the #WaveOfLight around the world at 7pm on October 15th as we remember their precious lives.