This is the next chapter in our long struggle with sick babies. If you are just tuning in, you may want to start at the beginning.

Previous Chapter: The Finding Out

 

My baby girl had Hirschsprung's disease. At least we knew what was wrong.

One of the Surgery Fellows (a doctor but practicing under another doctor’s supervision for a time in order to become a specialist) explained Hirschsprung's disease to us. His name was Dr. E. He was very nice and very thorough. He didn’t use tons of medical terminology that we weren’t familiar with. In fact, he even drew a picture on the leg of his scrubs with his ink pen to explain what a colostomy is and how it works!

I will try to explain it for you, but if you’re grossed out by poop, you may want to skip a paragraph or two.

Hirschsprung's disease is a congenital defect (it happens during development in the womb) that occurs in about 1 out of every 5,000 live births. The entire gastrointestinal tract~ your digestive system, from the throat through to your bottom~ is muscle. It moves food through with a wave-like motion. It’s kind of like “the wave” at a sports game, only instead of standing, it’s squeezes. The squeezing motion is coordinated by nerves in the muscles. When someone has Hirschsprung's disease, a portion of their colon (large intestine) has no nerve cells. The portion that is affected always starts at the rectum and continues up the colon. How much of the colon is affected varies from person to person.

So, what happens in the person with Hirschsprung's is that the food is getting digested and moving right along until it reaches the waste stage (in the colon). At that point, the poop is moving right out until it reaches the section of colon that has no nerve cells. The colon can no longer move it, so it begins to pile up at that point. It’s amazing how much a little baby’s colon can stretch because it’s filling up with poop. This is called an obstruction. It’s basically a clog. This clog makes baby’s belly get bloated and kind of hard. It’s filling his abdomen, which makes him not feel like eating.

Symptoms, according to International Foundation for Functional Gastrointestinal Disorders:

“Symptoms usually begin within a few days after birth. But some people don't develop them until childhood or even adulthood.

In infants, the primary symptom is not passing meconium, an infant's first bowel movement, within the first 24 to 48 hours of life. Other symptoms include…

•    Vomiting and abdominal distention as a newborn
•    Chronic constipation
•    More rarely diarrhea, fever, and distention (symptoms associated with enterocolitis – inflammation of the small intestine and colon).

Symptoms in older children include passing small watery stools, diarrhea, and a lack of appetite.”

The treatment for Hirschsprung's is surgical. The goal is to remove the portion of colon that is abnormal and non-functioning so that healthy bowel can be connected to the rectum. Then the child will be able to poop. And that’s a good thing!

Doctors’ techniques have advanced in the past 16 years, so treatment today isn’t always like it was for us. At our hospital, in 1995, the first step was to do a colostomy. The way Dr. E explained it to us was by using an example of a garden hose. Imagine you fold a hose like you want to stop the flow of water. Then you cut the top half of the hose, right at the fold. Now you have two holes that are still attached, one hole goes to the water source, one hole goes to the end of the hose. If the water is on, you will have water coming out of one hole, while the other hole is just there. That’s a colostomy. The surgeon finds the spot in the colon (through biopsy) where there are nerve cells. That is the spot that he kinks and cuts the slit in. Then the edges of the holes are secured to the skin, and you have two holes—a colostomy. One hole is where the poop comes out, and the other hole goes to baby’s bottom. Now you have bypassed the obstruction, and baby gets well. We were told that when Colleen was bigger and her colon had had time to heal, they would do another surgery to attach the healthy portion of colon to her bottom. This would likely be when she was around one year old.

Needless to say, the realization of the surgery was quite a shock for us. We had no idea if we would be able to care for a baby with a colostomy. It all seemed very daunting. We had a wonderful nurse who taught us how to care for Colleen’s stoma (that’s the colon part sticking out of the skin) and how to change the ostomy bag. She made it look so easy! The first time that we tried it, we quickly found that cutting a hole (that is just the right shape and size) in a sticker with a plastic bag attached to it and then getting it over a swollen stoma was not as easy as it looked.

After a couple days of pumping milk (my first real need to ever pump), I was quite ready to have Baby Colleen well and nursing again. Between the stress, pumping, and lack of sleep, my milk supply was extremely low. However, we had to wait for Colleen’s colostomy to begin working before she could eat. The first bits of poop in the osotmy bag were a welcome sight!

After a couple of days, Colleen was discharged from the hospital. It was wonderful to be back home with both of my babies!

I was quite ready to settle in and nurse Baby Colleen as often as possible and learn how to care for her new “pooper.”

 

 

Next Chapter: The Waiting

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