The NEC Society is honored to share stories of people impacted by NEC- this is Claire’s story.
By Claire’s mom: On May 15th, 2016, my husband Jeff and I were ushered into the NICU before we even had a chance to scrub in. Our favorite nurse met us at the entrance, her eyes full of quiet concern. We had gotten the dreaded call early that morning – Claire’s stomach was distended and her blood pressure was dropping rapidly. My worst fear was coming true, Claire had developed necrotizing enterocolitis. Just a few weeks prior I was on hospital bedrest being warned by the neonatologist about potential micropreemie health problems – ROP, PDA, lung issues, brain bleeds and, most frighteningly, NEC. “Please don’t let her get that one” I silently prayed after talking to the doctor.
It was quickly decided that Claire needed surgical intervention ASAP. Jeff and I sat there in shock as the small NICU room filled with the transport team to a local children’s hospital. Watching the team swiftly transport her from her NICU incubator to a large, loud transport incubator was a surreal experience. I didn’t even believe that a little 1 pound, 13 ounce baby – one who was gravely ill – could survive a car ride in Los Angeles traffic.
The surgeons and nurses were already gathered by her bedside when we arrived. We barely had time to sign the consent and be warned that her condition “may not be compatible with life.” We waited alone in a spare conference room for the most excruciating hour of our lives.
Thankfully, one of the surgeons came back with good news! They had removed a lot of dead bowel, but it wasn’t as widespread as they feared. Her bowel had perforated and they removed 52 centimeters of it, equaling approximately 2/3 of her colon and ¼ of her small intestine. They also gave her a temporary ileostomy so that her remaining gut could rest while she recovered. She was in critical but stable condition following surgery and we started to have hope again.
11 days later we noticed her changing for the worse. Her skin was mottled and her stomach looked distended again. Several hours later I was tearfully signing another surgery consent form. Again we warned that her condition may not be compatible with life. Again we were left to sit and wait in the conference room. I truly did not believe the surgeons would have good news for us this time. We began grieving for our daughter already. How could such a small baby survive two rounds of this devastating disease?
And yet she did. The surgeon came back and let us know that her bowel had perforated again, but they had not removed any more of it. They ended up just pulling the bowel up into a second ileostomy. The surgeon could not give us any idea about her prognosis and I found myself googling statistics like crazy. Not a good idea.
She had some complications after her surgery – collapsing lungs and sepsis – but once those resolved her condition became stable. And then she began thriving! She kept growing and weaned off the ventilator after two months. We started getting comfortable in the NICU, bonding with Claire and learning to care for her stomas. She had one of her stomas taken down in September and the next one will be taken down in December. Finally on day 197 they decided she was healthy enough to go home with us!
Claire still has some special medical needs (we give her IV TPN/lipids for 14 hours/day and take care of her remaining stoma at home), but you wouldn’t know it if you looked at her. She is a smiley, sweet girl who loves eating, playing and being held. I am so proud of how strong and resilient she has been through this whole ordeal. It’s been the most challenging year of my life, but also surprisingly the most beautiful.
You can read more stories of babies and families impacted by NEC on our NEC Stories page.