Note:  The purpose of placing this story on the website is to stress the seriousness of DI, even for routine surgery/medical care.   Should you have any comments about this story, please feel free to email the foundation.

Colton’s Last Day
By Lori L. Downie

December 18, 1991 started like any other day for Colton and me. But that day he was going to have tubes put in his ears for the third time. The surgery was scheduled for 9 a.m., and the doctors stopped Colton’s water at 6:30 a.m. For Colton, those few hours were a life-time to wait for the next drink. Most days he drank four or five gallons. He was 29 months old and weighed just 22 lbs.

Colton’s doctor was one of my best friends, and together we managed Colton’s NDI. At that time there wasn't a lot written about NDI, but she knew the basics.

An IV was started at 7:30, but at 9 a.m., the doctors were still running tests. I didn’t think anything about it at the first. Colton’s IV went into his main vein so they could take blood every 30 minutes; I didn’t even notice the extra tests. At 10 a.m., Colton was still urinating, and now I wonder whether I could have saved him. I was holding him in the rocking chair when the doctor came in. All she said was, "I’m sorry." I still didn’t think anything was horribly wrong, I just kept telling her it would be okay. Nothing was going to happen to him. "Don’t cry," I told her. Then she told me Colton’s last sodium was 177, and that all the other times she had made the IV solution with not enough sodium, so this last bag they had used more. Now they had to bring his sodium back down.

A team of six doctors showed up. I had never met them before. Colton’s doctor said she had to step out, that she was too emotionally involved with Colton, and couldn’t think straight. The team of doctors started another IV with almost no sodium in it. Then they called me over to him to talk to him one last time, as they were going to give him something to paralyze his body so they could treat him. When I walked over to Colton, his last words to me were, "I love you, Mommy." An hour later his body began to shut down. The whole time I was standing there I couldn’t think, but somehow I knew that what they were doing was wrong. For the next 13 hours I held my son as I watched him die.

In the beginning they told me the only way to treat NDI was with free water and that IVs couldn’t be used to control sodium levels. And every time you try and fail, you kill more and more brain cells. That day, all I had to do was pull the IV and give him free water. He would probably still be here today.

I’ve been told that children with NDI will be mentally retarded. But that doesn’t have to happen if we parents learn everything we can about NDI. We need to question every action our childrens’ doctors take. The treatment of NDI isn’t difficult or hard to understand. It’s simply: give free water.

We need to use our resources and tell our childrens’ doctors they need to contact other doctors treating children with NDI. About 80 percent of all doctors don’t know about NDI and how to manage it. One 10-minute call may provide information that could make a difference. It could help keep our children alive and healthy. We should develop a list of doctors treating NDI children, so doctors new to managing NDI can have resources to help them learn what they need to know. Parents, it’s your job to make your children’s doctors call the ones who know how to treat NDI. Although we must trust our doctors, we also must learn how to manage NDI and care for our children. Our kids are our world; we must protect them.

More than four years went by after Colton’s death, and a desire to have another child became overwhelming. My husband and I talked and cried and were so afraid, but we did finally have another, a son. His name is Alexander, and he is now four years old. Although Alexander has NDI, he is doing great. At first his sodium levels were tested every week, but as time went on the tests were spread out to every month, then every two months, and then became even further apart. He has never been hospitalized, and plays and acts like any other child. Now we also have William, who by the grace of God does not have NDI. William is almost a year old and has the prettiest yellow urine I have ever seen!