According to US Department of Health and Human Services at least one of the 500,000 newborns are affected by Hirschsprung disease. Hirschsprung disease is a disease acquired since birth, it is a congenital disease with operation as the only cure. I first heard this disease because of my son. We noticed the symptoms when he was two. I had recalled our experienced with Hirschsprung disease from a few months of his birth and after the pull through operation, might be of help to parents facing this kind of disease.
My son in his first few months.
1.Watery Poop and Allergies
I am mixed feeding my first born son and looking the right formula milk for him was very difficult. When I had him checked with the doctor, she advised that my son might have lactose intolerance. She advised me to use S26 lactose intolerant milk. And gladly it went well.
It was difficult to figure out why he couldn’t sleep most of the time. He often cried and irritable; he would stop crying after farting or burping while I was patting his back or his tummy.
3.Below average weight and height
We found it hard to hit the average height and weight during our monthly check up with the doctor.
4.He often times had hiccup.
Compared to my youngest, he often had hiccups.
My son in his 6 months onward.
1. Hard Stool
When he started eating solid, I found out that he had hard stools; gray and ball shaped pooped. I thought everything was just normal, so I gave him juices and soups. I made fresh juices in the morning; combining apple, watermelon, carrots and cucumber. Everything goes well, I also stopped going to his Pedia.
2. He hid when he felt pooping
He didn’t want anyone watching him pooping. He usually hid himself near to the door or under the table. Whenever I tried to get him or at least get closer to him, he’ll push me away. I thought that was just his way of pooping. (Later, I found out from our Pedia that he was hiding, because he was trying to concentrate pooping cost by hard stool)
3. Tummy hurts
,There was one incident I almost brought him to the hospital because he was staring at me and was crying so hard; I was difficult for me to figure out what was going on with him, but after patting his back and trying to touch his tummy, he farted and stopped crying. (I found out that every time he stares in my eyes and crying so hard, I feel that his tummy is aching)
4.Not so good appetite
It was so difficult for me to let him eat, it was a chaos when it was eating time. Often times he spit his food. I could see he was trying to eat because I am already angry and couldn’t help but spit it out specially when he has not pooped yet.
5. Skip pooping in 2- 5 days interval
There were some instances that he skipped pooping in days with an interval of 2 days, then 5 days.
Our way to knowing Hirschsprung Disease 2 years Old.
- He was 2 years old, when I brought him to his Pedia because he was not pooping an interval of 2 days, then goes 4 days; it happened for two weeks then he had fever. The doctor advised me to change his diet; might just be a simple hard stool problem which could be solved through proper diet. Then, I found out that apple and carrots could cause hard stool. Formula milk could also cause hard stool. The doctor gave him lactulose and suppository for a month. The doctor said ” If the problem still exists, we need to open the possibility of Hirschsprung Disease”. My eyes bulged and my heart was full of fear; and I got worried when I first heard this rare Disease Hirschsprung. So, I changed his milk, gave him fresh watermelon juice, cucumber, green leafy vegetables and soup. Tried to google what was Hirschsprung disease, crowd source about home remedies of hard stool. With high hopes that it was just a normal, hard stool problem.
- After a month again, my son skipped pooping, 2 days, then 4 days, then 5 days. We gave him suppository but seemed wasn’t working right away, it took him more than 15 minutes to poop, we expected him to poop 5 mins, after inserting the suppository, but he was crying and shouting so hard; he couldn’t pooped. We tried to help him, pat his back after 20 minutes, then a very watery stool flushed out, he vomited; and my sister who was a nurse, noticed that his tummy was big. That’s the time we brought him to the doctor. That was the time he’d undergone through several tests for Hirschsprung.
Facing Hirchsprung disease.
We usually call the X-ray machine as “spaceship” to at least lessen his fear each time he goes to the x-ray room. The X-ray for Hirschsprung Disease says normal, but our Pedias’ advised was to let him undergo a barium enema to roll out the reason why he has series of hard stools. Me and my sister saw how my son was having difficulty on pooping and we wanted to know as well what was going on with him. We decided to let him go with the test barium enema.
2. Barium Enema
Same with the x-ray for Hirschsprung he needed to fast to undergo a barium enema. It was difficult to see kids fasting, but he needed to go through with the process. I was pregnant at that time and I couldn’t go with him in the x-ray room. My husband works overseas, luckily I have my supportive sisters and parents who were with us. I let my sister go with my son, in the x-ray room; I was crying so hard when I heard his voice at the second floor of the hospital looking for me “nanay (mother) milk! milk! I want didi (He wants milk). I went down and tried to be strong for my baby in my tummy and for my son. I saw him in the glass window inside the test room while my sister was trying to comfort him; me on the side trying to hide myself from the radiation; I let him hear my voice: “Nak (Son), everything will be ok, you are strong. After that you can drink milk.” I saw the chemical was inserted in his large intestine, he was trying to move, cry and yell, nanay (mother), nanay (mother), I want nanay (mother) . And thankfully he was able to go through with it. With big hopes in our heart that everything would go well and we could fully go home with no worries.
When the barium enema result was released, we thought that everything would go well, the doctor even told us that we could go home. However, after she saw the result of the barium enema, she showed it back to us and explained. I called my sister who was a nurse to go with me to help me comprehend everything. The doctor showed us the screen and I saw white colors in the intestine. The doctor then started explaining.
Doctor: Barium enema was the test that these chemicals we put in his intestine should be flushed out after 24 hours of the test, we should not be seeing white colors in his intestine. This is the result we have taken from the X-ray of your son, after 24 hours. There were still white colors in his intestines, meaning: the chemicals were not fully flushed out after 24 hours.
Me : meaning there is a possibility that he has Hirschsprung Disease?
Doctor: Yes and we needed him to undergo biopsy to verify this test. Oh, no, this can’t be. I was thinking of my son’s health, the money and the surgery. My God, my son is too young to undergo these kinds of test.
We asked the doctor if we could go home yet and I needed to talk to my husband; and carry the issues with my family as well. We went home and I told my husband, I know it was also hard for him not being there to see the real situation. We tried to ask my sister’s opinion who was a doctor, we gathered some information about the credibility of the doctor who will do the biopsy and the operation, and the best hospital if in case we are going to go through with the process. We googled and I found only a few groups talking about Hirschsprung, I needed more information about it, I was looking for moms who have the same experience. While I googled my parents also does; most of the information we got in google was a scary experience about the many stages of operations and even have colostomy. I was trying to find a positive testimony about Hirschsprung and I found one great positive testimony of a blogger whose son had undergone operation younger than my son and I saw the kids picture and he was active after the operation. That was the testimony which gave me hope that my son would also get well. After a long deliberation and the doctors advised to let him undergo the test while he was still would help him to recover faster we have opened our minds with biopsy.
After a week we go back to the hospital and had him undergone biopsy. It was like getting a small cell from his large intestine to determine for positive and negative ganglion. To my understanding Ganglion is a small cell in our large intestine that plays significant role in transmitting signal to the other part of the cell that they need to flush out poop. Sadly, when I took the result with my son it says negative ganglion and the first thing that came into my mind was the “Operation” my son and the money. My tears were falling while going home. I questioned the Lord, why us? Still our last hope was to trust in Him at all times. We faced our fears and get strength from our son, from the support we get from our families as well.
We had to borrow money and my husband has to withdraw his retirement savings, we have exhausted our savings. It cost us about more than 500-700 thousand Philippine Peso from the day he got hospitalized and all the tests he went through. Nonetheless, we are very thankful for the doctors and the nurses who took care of him. She is doctor Batucan in Davao. Transanal Pull through my son has gone through this similar operation see the video here.
After the operation
1.He pooped 10-20 times in a day, then it goes lesser and now he can go to the toilet on his own, pooped every morning before going to school. But, same as a normal Hirchsprung Disease affected kids, he sometimes has small pooped in his brief.
2.Eating is better than before.
3. I don’t let him, eat so much sweets and artificial juices, I let him eat leafy vegetables and soups.
4.He is four now and a very active and smart kid.
After that operation, we were praying so hard that it should be the last, we understand that some kids have to went through more than one stage of operations and the doctor also has already explained to us that if Siam will not get well, there is a possibility of another operation. But, thankfully our Siam after that operation is doing great now.
To the parents who are facing Hirschsprung Disease always remember to lift everything to the Lord, our love, care and support will help our kids recover faster from all the test and up to the operation. If you may have faced hard times because of this Hirschsprung Disease, always remember that everything shall pass get support if you needed it.