Living with Hirschsprung's Disease

My dd ZaraLayna was born with a rare disease called Hirschsprung's Disease. Although she has had two surgeries when she was 3 & 4 months old Hirschsprung's is a lifelong disease that causes struggles for the child.

Hirschsprung's disease occurs when nerve cells that are normally present in the wall of the intestine do not form properly during fetal development. During digestion, intestinal muscles move food forward in a movement called peristalsis, requiring special nerve cells called ganglion cells. Because these nerve cells are missing in children with Hirschsprung's disease, normal peristaltic movement cannot occur. Consequently, stool backs up, causing either partial or complete bowel obstruction.

Eventually, a bacterial infection can develop in the digestive tract, causing more serious problems. Severe worsening of the obstruction can lead to a hole in the bowel (perforation) and severe infection. All children with Hirschsprung's disease require surgical treatment.

In children with Hirschsprung's Disease they either struggle with constipation or loose bm's..constant diarrhea making potty training a trial.
My dd ZaraLayna has diarrhea like stools and potty training is a trial for mama and for ZaraLayna. She doesn't realize she is pottying and has accidents quite frequently. Also passing gas always causes an accident.. It's something that has become an issue for her even at 4 and she struggles with it.. :(

Children with a non-dilated colon are considered hypermotile. Rather than constipation, they have a tendency toward diarrhea.

Children may have problems sensing the need to have a bowel movement. Since the urge to have a bowel movement is greater after eating, setting aside 10 minutes after meals to spend on the toilet may help.

She has to learn how to control her bowel movements which is hard.. I know it will take time but it hurts my mama heart watching her struggle with this...

Also any infection in her stomach or intestines could be very serious for her and even things such as stomach bugs end up lasting longer with her than the other children. She also suffers with tummy aches often and bad gas and digestion problems..

Another mama with a child with HD gave me some tips we are going to begin trying to see if we can help her stool to firm up and perhaps help her to learn voluntary bowel control. Perhaps these ideas will help with her digestion, tummy aches and pain also..

1. We're going to be cutting out all dairy from her diet.

2. Start giving her fiber to help firm up her stools..

3. Continue to help her with potty training and feeling and controlling her bowel movements.

My mama heart hurts for her and her having to struggle with this but there was a time when she was in such serious condition that her surgeon didn't know if she would or could make it through her first surgery but thank Elohim she did and went through another surgery after that. She is here and growing and otherwise healthy! We thank You Elohim for that.. !!