2013 Sparrow Children’s Center Miracle Child
Bella’s Story (written by her Mom)
Bella lost her entire summer: the summer before kindergarten. The summer I had set aside to teach her how to write her letters, our address and phone number, how to never go with strangers, and how to swim.
It all happened May 31, 2012. Her tummy hurt; she vomited up lunch. She continued to vomit and complain of pain. After 12 hours, we went to a local ER and were sent home with the diagnosis of gastroenteritis. I waited for the magic 24-hour mark when the stomach flu seems to cease. At 24 hours she was vomiting less but getting more lethargic. We went to Sparrow's Pediatric ER only to have it become clear how serious the situation. She had a hernia with 10 feet of her small bowel protruding through the perforation. Some of the bowel was strangled. It was unclear from the CAT scan how much. We hoped it wouldn’t be a lot. Dr. Jona performed the surgery while Dr. Guertin gave us updates. Dr. Guertin told us all 10 feet of her small bowel was strangulated and appeared dead. My husband asked what happened if she lost all of her small bowel. The answer was she would have small bowel syndrome and would be a candidate for a small bowel transplant. Dr. Guertin explained how Dr. Jona had laid the bowel out and was giving it time to revive. He returned to surgery, and we sat there during the wee hours of Saturday morning awaiting more news; good news we hoped. I will never forget seeing Dr. Guertin taking off his surgery cap and shaking his head in disbelief. All but two feet of Bella's bowel “pinked up” and came back to life. I had never experienced true relief like I did that day. She had an ileostomy where Dr. Jona had brought the cut ends of her intestines up through her abdomen. Bella would then eliminate her food through a colostomy bag while her intestines healed.
We all thought this was the beginning of the end. She would heal; we would go home and, in a few months’ time, we would come back for her ileostomy reversal. The timeline was perfect for her to start kindergarten on September 4th. It was one of the first things Bella asked. Will I still go to school, mama? My little girl never went to preschool. She looked forward to kindergarten with every ounce of her soul. It was our goal and what kept us going.
During our 3 week stay, we waited for final confirmation her bowels were working. Once Bella started eating, it became clear that something wasn't right. A small segment of her intestines had narrowed making eating impossible. Her intestines still needed rest so we went home with her on IV nutrition, drinking only water and awaiting a final surgery to remove the narrowed segment and reverse her ileostomy. After a week and a half it was apparent her belly was swelling and she wasn't able to pass what remained in her gut. On July 4th, Dr. Jona reversed her ileostomy and removed the narrowed segment. I watched Lansing's fireworks from her ICU room while she slept. I wished she was able to watch them with me.
Again we went home and again she stopped eating, drinking and being happy. We brought her back to the pediatric ER 11 days after her surgery. She had a bowel obstruction and it wasn't clear what was causing it. Bella improved. It seemed the obstruction was resolving itself. We were convinced she would fix herself and wouldn't need a third surgery. But then she worsened and it seemed surgery was the only option. Unfortunately we were stuck in the middle of a timeframe where it was too soon after her last surgery to do more surgery safely. We were advised to wait 6 weeks for her surgery. Bella required a tube down her nose to suction out her stomach contents during this time. We couldn't go home. Our only option was to wait it out at Sparrow Hospital. We decorated her room, painted windows, wooden toys, plaster molds, pet all the therapy dogs, did every puzzle in the playroom, watched movies, listened to the piano in the lobby, played in the fountains and the revolving door, shopped in the gift shop, picked flowers out of the gardens along Michigan Avenue, and planned for the start of school. It was the longest 6 weeks of my life. The final surgery removed another 8 inches of intestines that weren't the best quality. The goal all along was to preserve as much intestines as possible. Bella would need it to absorb nutrients for proper growth. But with each surgery it was apparent that not all of her intestines were going to perform their duties. In total, she lost just less than three feet of small bowel.
We were discharged on August 30th. Bella turned 5 on September 2nd and started kindergarten on the 4th. We worried about her strength and being able to sustain a whole day of school. The first day was a half day. When I went to pick her up from school I found her scowling on a bench out front. Her classmates were launching themselves into their parent’s arms holding back tears. Bella refused to come to me. I sat down next to her and she shared her anger and disappointment that school ended at lunch time. No one could understand my little girl's frustration but me. She had worked so hard all summer for this day and it was over before she was ready for it to end.
Bella has no lasting effects from her loss of small bowel. She absorbs food just fine and is able to eat her desired hot dog, sausage, and French fry diet. Aside from her scars, it is like it never happened. What she lost was 3 months of her life and 3 feet of small bowel. She lost the months we go swimming, take a vacation, eat popsicles and stay outside until the fireflies emerge. But she gained so much more than she lost. She gained compassion for others out of the compassion shown to her, new friendships that brightened her painful days, and pride for herself and her story. She considers Sparrow and the caregivers within it a second home.