Hirschsprung's Disease

Dear S.

I am the mother of a child that was born with this disease.
My pregnancy was not unusual, and I was told that there was
nothing that I had done that could or would have prevented this illness. He was taken shortly after his birth into intensive care due to the fact that he was not having any bm's, and as a newborn they expect this to occur shortly after the baby's birth.

My husband and I endured many months of hospital stays with our
son. He would become fine, and then lapse back into no movements
and became very ill. Finally, we located through our pediatric
doctor, a pediatric gastro specialist in St. Petersburg, FL,
who diagnosed the disease and referred us to a marvelous
pediatric surgeon who operated on him(Dr. Gail Kay). He endured three major surgeries by the time he was one year old. As your daugther is having problems as a six year old, I am not sure what the result or determination may be. But, hopefully
your doctor will be able to provide the guidance you need in
dealing with this disease. I understand this dysfunction to
concern some or most of the large intestine lacking the ability to push/move properly the body's waste/bile into the small intestine. In my son's situation they removed the part of his colon that was not useful, and he had to wear a colon bag until he was one year old, then the surgeon connected his functioning small intestine to his digestive/stomach in order to facilitate his waste process. He then did not need a bag. But he did have some problems adjusting to the acidity of his waste (which were mostly liquidy due to the shorter waste removal process). He is today a healthy 13yr old. He is quite a normal, we are blessed that he, our youngest child, is quite active and normal. He does have some recollection of his health issues as a baby,
but no long range effects, other than he loves attention!

God bless you! I will keep you, your child, and your family
in my prayers. FYI, there is also information about this disease
if you google on the net. They also have a Hirschrung's Society.
All Children's Hospital is where my child had his surgery, they
were outstanding!

K. H.
PS Let me know if I could be of any further help to you.

A good friend of mine, Kelley has been dealing with this for approx 4yrs since her son's birth. She could give you some great info and resources. She said you are more thatn welcome to email her / she is also a nurse. and has taken her son to specialist in chicago I asked her permission to give you her info her email is ____@____.com however she says she would much rather speak with you than type everything out.Therefore she said to give you her phone # ###-###-#### and she would be more than happy to talk with you about your concerns.
C. K

Hi S., yes, my youngest has HD. She is almost 10 now but we discovered this when she was just a few months old. It was something the nurses at the hospital should have known before we were even released. She had surgery when she was about 9 months old...If there are any questions you have, I'll try to answer them. Her Doctor/Surgeon was wonderful. I'll give you his name if you'd like, he is with All Children's here in Tampa.

Yes I have pleny of experience with it, however I was not aware that it could show up so late. I had a premature baby a year ago and he was in the NICU and released. Once he came home I noticed his stomach was swollen up real bad and I took him in for his circumsion (they do this later on preemies) and they told me they could not do the procedure because there was something wrong with his stomach. They did an xray and hospitalized him immediately. After two more weeks in the hospital and various tests including a biopsy and a test where they use tools to widen the rectum (sorry I can't remember what they call this) he was released. I then had to take him back almost once a month for the next six months or so to get this procedure done again. If you look on the internet there is alot of information on Hirschsprungs. Originally they were talking about taking a part of my sons intestines out and reconnecting it...so that he could use the bathroom. He basically was not having any bowel movements at all. However thank God they did not have to do the major operation and he is fine now. If you would like to talk to me personally I would be more then happy to tell you what we had to do. Please respond private and I can send my number or you can send yours and I will call. My advise would be to do the research so you understand what the doctor is talking about and then if they do mention the possibility of havind to do the major operation I would get a second opinion. After my son was hospitalized they waited it out and he ended up doing fine with the dialations (that was the word I was looking for earlier) The biopsy will determine how much of the intestine is not working properly. Ex. one centimeter to five centimeters ( I believe it was centimeters not inches but I could be wrong) We were very blessed to have one of the best doctors in Greenville, SC (We just moved here in July)and he was very patient, very informative, and very knowledgeable of the disease. A.

Hi S.,
Yes, I am very familar with it. My son was diagnosed at 2 day's old and he had to have immidate surgery. It is a disease where there are no nerve cells in part of the colon (usually the from the anus up) and that portion has to be re-directed temporaily via colostomy bag and eventually removed. He currently has a colostomy bag and should have the surgery to remove the no-nerve portion of the colon and reconnect the colostomy to the anus in about 6 months.
His problem was that he did not have any bowel movements and it is usually caught early in life. Your daughter may have had constipation etc. I wish you luck and even though it is scary,my son in doing great now and hopefully the next surgery will go well. If you have any questions or need to talk you can e-mail me at ____@____.com
My name is is L.