Pediatrician Dr. Jim Sears and gastroenterologist Dr. Jorge Rodriguez explain Hirschsprung's disease.
Alyssa was born in 2009 with a birth defect called Hirschsprungs Disease and was able to discreetly hide her special powers(that's what we have told her) until the age of 6. In November 2015, we noted her "chronic constipation" condition had worsened and before we knew it, she had gone 8 days without a bowel movement. That's when our lives changed forever.
After 11 months of doctor visits, enemas, laxative treatments, manual irrigation cleanouts, a 2 day hospitalization, invasive tests, behavioral treatments, psychological evaluations, a revert back to diapers and wipes daily, battling all types of Anxieties along the way and an overhaul to our parenting style, we exhaustively had reached a diagnosis! Now going forward, while we can't cure Hirschsprungs, surgery seems to be the only option to get back some normalcy for her. She will be undergoing a multi stage operation to cut and remove a portion of her sigmoid colon, where she will then have a stoma and a colostomy bag for approx 2-3 months. Once her Intestines heal from the cut, then they will go back in a perform a pull thru operation to reattach her colon to her rectum.
We have done all we can for our babygirl, and most importantly will continue to stand up for her as her voice. She has a wonderful heroic and brave complex to her that will be her pillar of strength.
As a mother of three, solely responsible for the expenses and time off, I am human enough to put down my ego and ask for help. Alyssa will not only be undergoing the procedures, but the long term treatment and costs associated that are in our horizon, are overwhelming. We are confident that with God's grace and protection, she will overcome these challenges and be the superhero she is meant to be!
Irina Pyatak ,
This is Jason he is ten years old and a twin baby,diagnosed with Hirschsprung's disease at 3months old.
When he was a day old he had surgery on his esophagus (HD related)his esophagus was very narrow and he had a hole in his trachea.
He has had three other surgeries one was open heart and spent the first year of his life in hospital.Jason had a ileostomy for about a year and then got reversal surgery.Today Jason is like any other ten year old boy !!!!!
My name is Georgina Altas and I am a mum of a child who has Hirschsprung's Disease. My son was diagnosed with HSCR as a newborn almost eight years ago.
I have set up a non-profit organisation called Help For Hirschsprung’s Disease to help families who’s children suffer from HSCR . My son’s HSCR was treated with surgery. But even children who are treated appropriately with surgery can still suffer from chronic problems with constipation, incontinence, abdominal pain and sometimes these children fail to gain control of their bowel movements. This can be a significant challenge for children of school age.
As a parent I worry for my son dealing with constipation and more recently, incontinence. I provide my son with a hygiene kit (my son calls it his toiletry bag) to take to school. These are small bags that he takes to school which contain a pack of mini wipes, 2 pairs of underpants and 2 mini plastic bags. These toiletry bags have made him feel more secure and confident knowing that he has everything he needs in a discreet toiletry bag that can be taken to the bathroom without anyone really knowing what it is. In all honesty these bags have been a real milestone in dealing with his disease at school. It gives my son independence and peace of mind.
Our experience has inspired me to commence making up these bags for other children with Hirschsprung’s Disease, particularly children of school age. I supply these toiletry bags at no charge (however, depending on shipping location, parents or carers may need to send me a post satchel with return postage paid so I can send the bag to them). I have attached a document containing pictures of a hygiene bag to give you an idea of their appearance. I am hoping that these bags can help other children with HSCR as they have for my son.
I would also like to offer a network of support and information to children and their families through my facebook page, instagram page and this website.
I am a mum of three precious children, one suffering from Hirschprung Disease...wanting to connect, share, support and make a difference.