Hi, my name is David Joseph Chiappetta and I was born on July 27, 2007. I was born with something called holoprosencephaly and it means that my brain was not divided and I don't really have much of a brain. I do have a brain stem which controls my heart and lungs so that's good. My hypothalamus doesn't work either though so I can get either really hot or really cold very easily and quickly. Mom and Dad have to be my thermometer for me though which keeps them pretty busy at times. I also have a feeding tube in my stomach so I can eat since I can't swallow and I have a trache so I can breathe since I only have one nostril and it's blocked. Mom and dad have to suction me out too since I get mucuous buildup and have acid reflux. Sometimes I can keep them busy with that too. I also have Diabetes Insipidus which is a water issue and so I have to be given a certain amount of water with my medicines. If my sodium level is too high then that will cause me to have more seizures as well as if my temperature gets too high. I already have a seizure condition because of my lack of brain so some things can make it more complicated like high temperature and high sodium. See, my normal temperature range is 94 degrees to 97 degrees. Anything above that can cause me to have more seizures. See, I told you I keep my parents busy. :-) The doctors said though that I may not make it to birth and if I did I would only live a month or so. They also said that I will not be able to talk or walk or crawl or any of those normal baby things. Well, I'm here to tell you that I am4 years old now and I am learning to pick my head up when on my tummy! I'm also learning to put some weight on my legs and I laugh and smile. Cool huh? I just wanted to add that although you see mom and dad in the description above...it has just been mommy and me for a while now since daddy passed away in January of 2010.

Wednesday, December 2, 2009

Just wanted to update and say that for now I guess we are no longer Johns Hopkins bound as mommy had to cancel all appointments because of payment. We are sitting holding tight to see what God has in store. Now it's trying to find other doctors in WV who would be as good as what I've had at Hopkins.


JoAnn said...

God will provide the best for you, David and Mark. Johns Hopkins is the loser by not keeping David.

Anonymous said...

Debbie, I am so sorry to hear of the death of your husband and problems with John Hopkins. The hospital has patient advocates which you need to get in touch with especially now. There are federal problems that are available to help you such as the Hill Burton fund and other funding. I will try to get you some information for help especially for David. If you need anything please email me at
Again our deepest thoughts and prayers, Rebekah and Wayne Malatt