Kelly's Story

My first child Kelly had a "normal" ultrasound around 24 weeks in her mommy's tummy. About 35 weeks they thought the baby felt small, so they sent us for another ultrasound and then the world seemed to fall apart. The doctor's gave us poor statistics (likely death) and all kinds of possibilities to what had caused it. They told us she would weigh less than 4 pounds; she came out at 6.5 pounds. She spent 11 days in the hospital getting her lungs developed.

Dylan, who is now 10 months, was followed very closely throughout pregnancy. As late as 28 weeks, he appeared "normal" and they knew what they were looking for. Two and ½ weeks later, an ultrasound revealed a dramatic reduction in amniotic fluid and we entered hell once again. The specialists told us that this disease "tends" to develop in the early third trimester, but I believe that is only an opinion.

Because Dylan was followed so closely, he had huge advantages over Kelly (as her illness came as a complete surprise). He spent 9 days at the hospital before coming home and has done so well since.

ARPKD follows such different paths even in the same family. Don't lose hope. One thing I have learned is to question everything thing the doctors say. I never take what they say at face value. My wife Shelly says I give them a hard time and I agree. They know if they are not on the ball, I will hound them until they do what they should do. Now they know us and us them, and we are becoming a team. Doctor's are really gifted and smart but they also look after 100 -1000 other kids. That is why we as parents have to ask and demand results if necessary.

Kelly is now 4, beautiful, energetic and the destroyer of all evil dragons and bad guys (i.e. me). They could not have been more off. I know the bad times are not too far off, but I’m amazed at what we would have missed if we had listened to the doc's.