Seeing the hand of God at work

The reaction to my post last week was, thankfully, very positive. Though I appreciate all the kind words, I am afraid that what I wrote didn’t accurately portray why I wrote it. Jewel’s miraculous recovery after being beaten to death had nothing to do with me, and everything to do with God.  Being a pediatric surgeon allows me to see the hand of God almost every day. I am reminded of how fragile life is and how random it can seem.  God is there; you just have to decide to see him. I had a case not too long ago that reminded me of this.

The Jones boys still hadn’t been named when I met them, and were called simply “twin A” and “twin B”. They were born 13 weeks premature. We were called to the neonatal intensive care unit when they were 2 weeks old. At a little over one kilogram each, they were actually pretty big for their age. They both had been eating for a week and now twin B’s abdomen was quite distended and tender. His blood pressure was low and his respiratory status had deteriorated to the point that he was put on the ventilator. An x-ray of his abdomen showed the classic signs of NEC and the neonatologists were concerned he might need surgery. He didn’t initially, but six hours later we were prepping him for an operation.

Necrotizing enterocolitis, or NEC, is a disease of prematurity. It is sometimes described as an infection of the intestines but that’s not accurate. We call it that because it is easier to explain to the parents.  The vasculature in these babies, some as small as 400 grams, is quite fragile and prone to disruptions. In the case of NEC, the fragile blood vessels make the blood supply to intestines precarious. Any additional stress, like simply eating, can significantly impair their perfusion. The intestines die and the stool leaks into the abdomen causing a severe infection and sepsis. NEC can affect part of the intestine or, in the worst cases, all of it from the stomach to the rectum.  In the least severe cases babies can make a full recovery and never require surgery. In the worst cases, the sepsis becomes overwhelming and the baby dies.  Surgery does not treat NEC it merely removes the part of the bowel that is dead and, hopefully stops the progression of the infection.

The pre-operative discussion in cases like this can be challenging. The parents couldn’t make sense of what was happening and wanted to know why their son suddenly needed surgery. Their sons were fine 24 hours ago, now one of them was so sick he couldn’t breath on his own and needed an emergency operation. They were talking to a surgeon they had never met before about having part of his intestines removed, maybe all of it. They wanted to know if Twin A was going to have the same problem. Other than telling them Twin B would loose at least part of his intestine I couldn’t say. There was no way to know if his brother would also develop NEC.

At surgery, our worst fears were realized. All of the intestines were dark and dusky and most of it was dead. There was stool throughout his abdomen. A normal baby this age should have more than 100 centimeters of small bowel. Twin B had about seven cm that looked ok. The rest, including the large bowel was dead. We removed what was obviously dead and left what little there was that looked alive. We also left in the bowel that didn’t look very good but wasn’t obviously dead. We irrigated the abdomen and closed with a plan to return in another 24 hours or so for a second look. With the dead bowel gone, the neonatologists could hopefully stabilize him and perhaps improve the perfusion to the questionable bowel.  I explained their son’s situation to the parents as best as I could.  They understood the gravity of the situation and knew that their lives would never be the same.  If the family had decided to withdraw care we would have supported them.

B’s condition improved slightly and the parents decided to proceed with the second operation. The questionable intestine was now completely dead and he was left with seven centimeters of small intestine and no large intestine.  Twin B’s chances of having a normal life, of eating everything by mouth, developing normally and doing all the things a child should do, were virtually zero.

For the first few days after his second operation Bs condition stayed the same. He was still showing signs of a severe infection and remained on the ventilator.  I can’t speak for everyone but I think most of the doctors and nurses taking care of him hoped for a merciful death.   No one wants a child to die but we all knew what lay in this child’s and his family’s future. His brother, meanwhile, was feeding and growing quite well with no evidence of NEC. He was discharged home about 2 weeks after his brother’s last operation on no medications getting all his nutrition by mouth.

Over the next few weeks Twin Bs condition improved to the point that he was taken off the ventilator and was able to maintain his blood pressure without any medications.  He had two more surgical procedures and was discharged about 2 months after he was born to a specialty hospital that deals with children who require complex medical and rehabilitative needs. He received most of his nutrition through a special intravenous catheter.

This happened about 2 years ago.   I see Twin B, who now has a name, from time to time. He lives in the same rehab facility but is occasionally admitted for a fever, or a problem with his feeding tube or some other issue. His mom is wonderful and caring and always with him.  She tells me it’s too hard for dad and he still can’t deal with all they have been through.  Their son will never be “normal”. He will never be able to run around and play with his brother. Short of a future small bowel transplant he will never be able to eat like other kids, no ice cream treats or cake for his birthday. He is also significantly developmentally delayed and still doesn’t talk.

Brothers born at the same time, from the same parents and fed the same formula. Twins, treated at the same hospital and cared for by the exact same team of doctors and nurses. One feeds and grows and leaves the hospital relatively quickly, able to lead a normal life. The other will never be able to eat and is so disabled he may never leave the skilled nursing facility where he lives. If that’s not the hand of God, I don’t know what is.

About the Author
Marc Arkovitz is a pediatric surgeon practicing in Westchester, New York and an associate professor of surgery and pediatrics with more than 20 years experience working in both Israel and the US.