All about poop OR a Hirschsprung's success story

So I decided to write this post after googling something today. My oldest son, Blayne, was born with Hirschsprung's Disease and I had a quick question about probiotics and kids with HD. But when I googled it, I only seemed to be able to find stories of kids who are having a much harder time with their condition than Blayne is. So I thought I would write this on the off chance that anyone out there ever stumbles across this blog while looking up information on Hirschsprung's to let you know that there are success stories out there! I remember looking things up when Blayne was born and diagnosed and quickly becoming overwhelmed with bad stories, with horrible complications, with sort of worse case scenarios. And I certainly don't want to minimize what things other parents and children are going through because I can only imagine how hard this would be if Blayne wasn't so lucky. And those stories are definitely a part of HD. But it's not the whole picture! So I thought I would write this as a little word of encouragement to those parents who may be starting out their journey with a child with Hirschsprung's. Just to let you know that life isn't always that bad and that things definitely don't always turn out so horrible.

Blayne was born in November of 2006. He was delivered via C-section, had a little trouble getting started with breastfeeding and also had trouble pooping right from the beginning. {Slight disclaimer - this post is going to be, as I said, all about poop. So it will be filled with words like 'poop' 'butt' 'shart' 'fart' and possibly others that I can't think of now. You've been warned.} I was told that a slight delay in passing meconium was not really a big deal or cause for concern. A nurse had to help him pass that by doing a little anal stimulation {haha, there's another one!} with a long q-tip like thing. They took an x-ray before we left to check for any blockage but nothing was seen. And then he seemed to be fine. We went home and worked on breastfeeding. I did a lot of skin to skin contact and just spent a LOT of time trying. And he seemed to get it! Looking back I see now some things that were warning signs but at the time I didn't notice them. But he would nurse for a looooong time.  Like an hour and half. Just on and off, he would fall asleep and then wake up and nurse some more but he wouldn't want to be taken away. And yet, his mouth always seemed sorta dry. Even after those marathon feeding sessions. Also, he never pooped once we got him home. Around day 4 or 5 he passed a little something that looked almost like rust. But it wasn't poop. We called the dr multiple times but were told that sometimes it just happened and to keep a close eye on him. When he was a week old we went back for his first checkup. He had lost some weight and it was a concern that he hadn't pooped yet but there were no other signs that anything was wrong. Pyloric stenosis was talked about but nothing was mentioned that made us super worried. So we went home. And then that night he threw up a little and it was green. That's a big red flag btw! We called the doctor and were told that if he did it again we would need to bring him in immediately or to the ER. More green throw up the next morning. So we loaded up and headed to see our doctor in Atlanta rush hour traffic. It was not a pleasant ride. As soon as we arrived, his doctor took one look at him and told us to go immediately across the street to Scottish Rite, the children's hospital. He did look sick at that point. Pale, lethargic, skin sorta dry, he had all the symptoms of dehydration only we didn't know to look for it. We spent the next few hours in the ER. Blayne was 8 days old. The next few hours are a bit blurry in my mind but a few things happened. Tests were being run to determine the problem. Pyloric stenosis was quickly ruled out. I don't really remember what else they were testing for but I do remember I kept asking "ok so if it's not this, then what else could it be?? what's the worst case scenario here??" but no one would tell me. Probably a good idea considering I was a first time mom, with crazy hormones. In my mind, I was already thinking that he had cancer and was going to die. I was definitely hormonal and slightly crazy. Soon after arriving I was told I couldn't feed Blayne any more. Probably one of the hardest things during our week long hospital stay. Trying to comfort your hungry baby who is crying and upset and the one thing he wants is right there and I can't give it to him... heartbreaking. But... back to the ER and the first few hours. At some point we were told they needed to start an IV. Eek. They couldn't get a vein in his arm, hand or foot. After multiple tries they asked if they could try to get an IV started in his head. What?!? But I guess it's not so crazy. There's a big vein there, kids can't reach to pull it out, it can be stabilized and held in place and as parent's we could be super careful of it while still holding and snuggling our baby. But the nurses did advise that I leave the room for that part. I did and I remember crying in the hallway as I listened to him cry. {Another side note, at this point you may be thinking the story actually sounds pretty friggin horrible and you would be right. Those first few weeks with him and HD were awful and terrifying. But trust me, things get better.} So IV in and good. Filling him with fluids. He has also started throwing up some more (brown and green) so a tube was put down his nose and into his stomach. 

In the ER. I'm only laughing because my hubby said something dumb 
as he took this pic, not because I really found anything funny that day.
You can see Blayne's IV and the tube from his nose. And yes,
that is poop in there, coming out of his stomach.

A specialist was introduced at this point. Dr. Theodore Brand. We can't say enough about how wonderful him and the entire staff of Scottish Rite are! He mentioned Hirschsprung's fairly early on and told us some of the signs. But they were still just testing. One thing he said he wanted to try was to stick a tube up Blayne's butt. If it was HD and there was a blockage, hopefully the tube would bypass that and allow him to poop. And boy did it ever. He put the tube and poop came flying out. It was sorta disgusting but at the same time we were happy he was getting all that grossness out of him. Did you know that a baby has 18 to 21 FEET of intestine inside?? And all of Blayne's was full of poop and backed up. That's why he was throwing up green and eventually brown. He couldn't poop it out, so the only other option his body had was to throw it back up. That's also why he was dehydrated and sickly and lethargic. He had to have a barium enema as well as a barium swallow to determine where the blockage was located. I don't really remember what that showed but it must have told the dr something because he said at that point he was fairly certain it was HD and he was going to have to do a biopsy to confirm. The day we spent at the ER was a Friday. Dr. Brand said he wasn't sure if he could do the biopsy that night so we might have to spend the weekend in the hospital and resume testing and treatment on Monday. I must have sorta freaked out or cried or Blayne looked especially pitiful or something though because he ended up staying till laaaate that night to do the biopsy. It confirmed that Blayne did, indeed, have Hirschsprung's Disease. Surgery was scheduled for the following day, on a Saturday. Blayne would be 9 days old and he was having major abdominal surgery. To say we were scared was an understatement! The first night we spent in the hospital is forever etched in mine, and my mother's, memory. The hospital was full so we got put in an outpatient recovery room. It was roughly the size of a walk in freezer.  Maybe smaller. There was enough room for a crib (which we didn't use) and a chair that folded out into a bed (haha) and we crammed one other chair in there. It was so crowded. My poor husband was in school and couldn't take much more time off and my mom was around so she said she would stay that first night with us. I slept, very little, and my mom held Blayne most of the night and neither one of them slept very much at all. It was easier for her to comfort Blayne because of the whole no feeding thing. He didn't settle down with me, at first, as well as he would with her. Probably because he wasn't so close to eating without being able to eat! We were able to give him a pacifier dipped in sugar water and that was it.  Poor little guy.  One of the longest nights of my life!

The next day we got moved to a bigger, inpatient room. At some point Dr. Brand explained that while Blayne had HD it was actually a best case scenario for what he had. Hirschsprung's is a condition in which a portion of intestines has no nerve endings and therefore no way to push anything past that point. Some people have the affected section higher in their intestines and some lower. Blayne's was right at the end of his intestines, right at his anus. This was good because it offered the best chance of success with a type of surgery called pull-through. Basically, they would cut around Blayne's butt hole, pull through until they got past the affected part, cut it off and the sew him a new anus. They were able to do a laproscopic pull through which means that they used tiny cameras inserted through his belly button. The only visible scars he has are two teeny tiny ones on either side of his belly button. There are some more scars in his belly button and some inside his butt but we can't see those. Earlier on that Saturday nurses inserted a PIC line to give him more nourishment but they left the IV in since it was already there, it was secure and it was just a good back up. They took him off to surgery and he was gone for a few hours.

After his surgery

When they gave him back to us, he looked about the same but Dr. Brand said that things went very well and he was very happy with the results and he thought Blayne would have a great outcome. Only time would tell how much control his new butt had but as far as he could tell then, things looked good. We went home on Monday, after a few more days in the hospital and time to reintroduce feeding starting with 5 min and working our way up. Blayne never had any issues breastfeeding after that. =)

Daddy love

He had to go back in for some outpatient surgery the following February to stretch the scar tissue out so that he could continue to poop. Following that surgery we had to stick little sticks in his butt at home to keep the tissues from healing too tightly. We did have some problems with diaper rash but I don't think nearly to the extent that I have read about other HD patient's experiencing. We were able to keep Blayne's fairly well controlled with Bordeaux Butt Paste and as much as possible I would let him air dry and lay around with no diaper on or just a diaper pad under him. He did experience a little lactose sensitivity but that has disappeared and I really don't know if it had anything to do with HD or not. And after the surgery when he was almost 4 months old, he has been as normal a child as I could have ever thought. He did not suffer from constipation other than what normal children go through. He was potty trained by the age of 3. He has not had to have any follow up procedures or surgeries. He did have to see a surgeon once a year for the next few years but we took him last when he was 5 and the surgeon said that unless there were complications or questions we did not need to come back. The only issue that he continues to have is with 'sharting.' He will think that he has to fart and something else will come out. But this does not happen nearly enough to interfere with him being a completely normal little boy and living a completely normal life. Our doctor explained it like this: most people have a little pouch at the end of their intestines, right above the anus, where they can store poop when they have to hold it. Blayne's was removed. So when he has to go, he has to go. He can't hold it for a long time like most people can if necessary. And sometimes, there will be poop there ready to come out and when he farts a little will come out. He never poops in his pants, but just sometimes has accidents. This is really only a problem when he has an upset stomach or diarrhea. During those times, he has more accidents than normal. On a bad day I would say he will shart 4-7 times. But those days are very rare. It was worse when he was littler because he didn't want to sit on the toilet until he was all the way done.  Now we just give him a 3DS and he's happy to sit on the pot for hours. =)

Last year he went to pre-k for 4 hours in the morning. I talked with his teacher at the beginning of the year and explained about HD and told her that when Blayne has to go, he needs to go. I also told her that I would keep a change of clothes and underwear in his bag just in case. My biggest concern was and is that he will have an accident at school and be embarrassed and then smell funny and get teased. Thankfully, that has never happened. I can think of a handful of times last year that he had an accident at school and he was able to clean it up and handle it himself. This year he is in kindergarten. Again, I told his teacher and he knows what to do. We explained to him that he has a special butt, that we bought it for him when he was just a tiny baby and that drs had to make it for him but it doesn't work quite as good as the ones God makes. So he will sometimes have accidents. We told him it's nothing to be embarrassed about but that he doesn't need to tell anyone, he can just say he has to go to the bathroom, grab his bag and take care of it. So far this year he has had to do that once or twice and it has  been no big deal. He said no one notices and he doesn't get embarrassed and he is fine to handle things on his own.

Today - a happy, healthy, muddy little boy

Earlier today I was looking for information about probiotics and kids with HD and that's when I found all those stories of children and parents who didn't have as good of an outcome as we did. And trust me, I know it's nothing we did, we were just incredibly blessed and lucky. Blayne is almost 6 years old and is the most amazing gift from God. We have another son, Sawyer who is a year and a half old and he does not have HD.

So there you have it! Our Hirschsprung's success story. For those of you that know us, you know that Blayne is totally fine and that for his sake, we would rather a ton of people (especially kids) not know about this. So I'll just write about it on the internet! Haha. And for those that don't know us and may be searching for information about HD or whose kids have just been diagnosed or who maybe have been living with this for awhile, I hope that this in some way encourages you. God Bless you all!

Bianca