Gregory was special from the very beginning. He was born in the VIP suite of a hospital here in Nashville, the same room where many local celebrities (Garth Brooks, etc.) welcome their new babies. (We thought this was only because all the other rooms were full, but maybe it was because he was so special.)
Gregory was born on February 20, 1997, following a full-term, uneventful pregnancy. He weighed 7 lbs., 6 1/2 ozs. (big for our families) and had Apgar scores of 9. My husband and I were surprised and so very pleased that he seemed so healthy that the nurses let him remain in the room with us for almost three hours following his birth. We cherished that time together, just the three of us bonding. We busily called friends and family members to announce the happy news and could not even tell people how much he weighed since he had not been taken to the nursery for a weigh-in yet.
At thirty-six hours of age, Gregory had not yet passed meconium. We were still in the hospital for unrelated reasons. The nurses and pediatrician seemed mildly concerned, but they used a rectal thermometer on him and he had a bowel movement. After that they dismissed their concern, and so did we. We brought home our "healthy", beautiful baby with great joy and anticipation.
But, Gregory liked to sleep instead of eat. This had happened with my older daughter, so I just figured that's how my babies were. For about the first two weeks, I had him at the pediatrician's office almost every day for weight checks, nursing tips, etc. After a great deal of effort, he began nursing well and gaining weight wonderfully. At his two-month check-up his weight and everything else seemed terrific. His bowel movements had slowed down to just every few days, but they looked normal and he did not strain an unusual amount to pass them. The doctor's office assured me that this was normal for some breast-fed babies. All was well.
The weeks passed and Gregory's personality developed. He had a smile that lit up his whole face. He liked his rattles, sleeping with his mom, and watching his sister's cartoons. At about 3 1/2 months of age, I began to introduce formula so I could go back to work. Once I began giving him more than one bottle a day, he started to have problems. He had horrible gas and accompanying pains and began to spit up a lot. I thought he probably needed a different formula. After consulting with the doctor's office, we changed the formula a couple of times. One night, he vomited several times and seemed extremely uncomfortable. I went back to exclusively breastfeeding him and took him in the next day. By this time, the vomiting had stopped (the formula had also stopped). They took an x-ray of his abdomen to check for an obstruction and did not find one, so concluded it must be a virus. They also advised changing formula to Nutramigen.
Well, the vomiting stopped, but the gas pains got worse and so did the infrequency of bowel movements. I knew this was not right. I called the pediatrician once again and after discussion, she referred us to a pediatric gastroenterologist at Vanderbilt Children's Hospital. The gastroenterologist thought Greg's symptoms definitely sounded like Hirschsprung's Disease. (Hirsch-what?) That same day, we had a barium enema done, which did not show signs of the disease. The radiologist diagnosed Greg with severe constipation. However, the gastroenterologist thought they should do a suction biopsy to be sure. Reassuring us that there was a 90% chance he did not have Hirschsprung's, he sent us home with instructions to come back the following week. Five days later (the first available appointment) we went back for a suction biopsy. We were pleased to tell the doctors that Gregory had had a large bowel movement only two days before; but we were concerned that it did not appear that any of the barium had been passed. Two days later, we were informed that the suction biopsy did not show ganglion cells and that we would be referred to a pediatric surgeon for a full-thickness biopsy.
Unfortunately, we had to wait two more weeks to see the surgeon. In the meantime, we became VERY concerned about Greg's distended abdomen, fussiness, painful gas, and failure to have a bowel movement. We took him to the pediatrician who also became quite concerned upon looking at him and doing an x-ray. His intestines were full of stool and still contained lots of barium from two weeks before. Two enemas were administered in the office and she advised us to begin putting Milk of Magnesia in his formula. In the next 24 hours, Gregory lost six ounces and had more than a dozen bowel movements. He also became very fussy and began refusing to eat more and more. A couple of days later, we returned to the pediatrician because I was worried he was becoming dehydrated. He was diagnosed with an ear infection. The doctor gave him an injection of antibiotics and did a blood test to check his white blood count. She said he was amazingly well hydrated considering how little he had been eating.
The next day, we finally got to see the surgeon. After examining Gregory and listening to our history of his problems, he decided to do surgery the next day. Just prior to going in for surgery, Greg had several bowel movements. By this time, he was straining terribly to pass stool; it looked like his insides were coming out. The stools looked a little unusual, but not what we considered remarkably loose or hard (at least one nurse also observed this). Greg was in surgery much longer than anticipated, and when it was over the surgeon informed us that they had not found ganglion cells anywhere in his colon. Ganglion cells were found at the end of his ileum and he received an ileostomy. The surgeon told us how rare this was and also that he had put Gregory on two different antibiotics.
Gregory did terrific for about 24 hours. He rested comfortably and even began eating some formula. Then he began to vomit bile. He vomited about seven times and began crying. Gregory never stopped crying until he went into respiratory arrest about eight hours later. During that time, the nurses put a tube down his throat to absorb excess bile and they upped his pain medicine from Tylenol to Morphine. He ran only a low grade fever. His crying continued as my husband and I tried and tried to comfort him and get him to rest. We were assured that he was probably hungry and uncomfortable from the tube. His crying started to get weaker shortly before midnight. We thought he was getting sleepy finally. When the nursing student came to take his vital signs, she found no blood pressure. He went into respiratory arrest only a couple of minutes later. Our world fell apart in those couple of minutes; it could not have been more shocking and sudden to us. They eventually resuscitated him and moved him to the PICU, but they never really stabilized him. No one could really tell us what was going on or why this was happening. Eventually we were told that he had no brain activity and would die shortly. Our very precious, beautiful little son passed from this world the morning of July 4, 1997. He was four months and fourteen days old. The autopsy report showed evidence of enterocolitis and sepsis, caused by a very resistant strain of bacteria.
This story is written in Gregory's moms own words from her heart lets take a moment to reflect on this child's life and remember him in our prayers