Tuesday, August 2, 2011

David's Hirschsprung's Story - Part I




I've made a few references now to the amount of time spent at doctor offices this summer and David's health...I suppose I should now tell the story now that we know what is going on and have a definitive diagnosis.  I don't really want this to be a one-topic blog nor do I want to share more than I am comfortable with and violate his privacy but it's now part of our lives and it doesn't make sense for me to leave it out.  It's taken a lot of our time and energy and prayers these past few years and it is now our story, whether it makes 'fun' blogging or not.  Besides, if I can help just one other family who may be dealing with this and happens to come upon this blog through a search, it's worth it to me to take the time to lay out this info.  And I have to admit it's probably good for me to write it down now before the details get fuzzy and I don't remember all the things I need to for David's future needs and so that he knows his own story.

David's birth was perfect.  He was born at home, in the water, into his Papa's arms after an intense five hour labor.  There were candles and it was the middle of the night and it was just so beautiful.  I couldn't have asked for better.  Everything seemed normal.  He nursed right away and then was really sleepy for the next day or so.  It seemed fine, we kept him warm laying directly on me because his temperature was a bit low.  We were starting to get a little worried when he didn't have his first bowel movement.  It was right around the 24 hour mark that he finally did and we thought all was fine.  We just attributed it to the fact that he hadn't nursed much and his system was moving slowly.  He perked up and acted like a completely normal brand new baby.  For the next four months, everything seemed fine, aside from the fact that he was a pretty high-needs baby.  I really really thought he was going to be my "easy" one and I was very wrong!  But health-wise, he seemed okay, though I did go through some elimination diets to see if that would help him be a bit more content.

Fast forward to about four or five months old.  He started going longer and longer between bowel movements.  This can be completely normal for an exclusively breastfed baby.  Breastmilk is so easily digested and such a complete food that often there is little 'wasted'.  Everything I read said that it can be normal for such babies to go two weeks without a bowel movement.  When he did go, it was not a normal breastfed diaper and we would have to 'help' him push it out.  I started researching during this time to try and figure out what was going on.  I knew it wasn't normal but the doctor was so unfamiliar with normal breastfeeding (almost all are, it seems) and the only advice people could give me was to try prune juice or corn syrup.  That wouldn't solve the underlying problem of why an exclusively breastfed baby could be constipated and I didn't want to complicate things further.  I did eventually try the prune juice (are there babies that will actually drink that??) and nothing.  The only thing I could find online was that constipation in an exclusively breastfed baby was not normal and that it was a sign that something was wrong...either a strange reaction to something mom is eating, possible lead poisoning, botulism, or Hirschsprung's Disease.

I took myself off of wheat and dairy and did several different diets to see if that would help.  I was pretty confident that botulism wasn't a factor and while I supposed that lead could be possible, it didn't explain why he was normal for four months and he wasn't drinking our water (or ingesting paint) anyway.  Hirschsprung's didn't seem likely since (the sites said) most babies are diagnosed within days of birth and don't appear normal like David had.  And then at maybe six or seven months, two weeks passed.  And then we noticed his that his little tummy was getting harder and more distended.  I took him to the doctor.  The doctor could immediately tell that he needed to go and needed to go soon.  He was pretty impacted and if he didn't go soon with the help of a suppository, the doctor advised us to take him to the emergency room.  That was scary.  The suppository did finally work that evening for my poor little guy.  The doctor had no help as to why this was happening.  I brought up Hirschsprung's and he waved it off saying it wasn't possible.

From that time on, I kept hoping something would click and he would begin to go on his own.  But he didn't.  He began to need outside help to have any sort of bowel movement.  Of course, I worried that we were just making the problem worse and prolonging it by using the suppositories (you know how medicine packages always say 'do not use for more than x amount of time without consulting a doctor'? Well, our doctor seemed just fine with it).  I was repeatedly assured that this was not likely and that he had likely 'trained' himself to not go and that if we got him on a consistent routine, he would eventually pick it up and everything would be fine.  This seemed strange to me that a child as young as he was would do that but we needed to do something and we had no other answers at the time.

I looked more into Hirschsprung's and learned that it was often a hereditary disease.  This actually turned a lightbulb on for me.  When Brian was born he had to have emergency surgery for necrotizing enterocolitis when he was a day old.  The details had always been fuzzy to him and the most he knew at this time was that his intestines had somehow formed into a "gangrenous mass" in utero and that it was impossible for him to have a bowel movement, necessitating emergency surgery.  His parents were told that it was a strange birth defect and that it wasn't something that could happen again.  They eventually removed a good portion of his intestines and he spent his first three months as a baby in the hospital.  We began to wonder if something had been lost in translation (HD deals with the lack of ganglion cells...perhaps gangrenous was in fact, something to do with ganglion or something?) or if the doctors that had taken care of Brian could possibly have not been familiar enough with the details of Hirschsprung's and that maybe that was part of what Brian had suffered from at birth.  We've since learned that what Brian had was definitely different than HD and that supposedly they are not related, though I am not convinced that these 2 rare (but similar) conditions could happen in father and son without it somehow being related...but I could be very wrong.  I am blessed that Brian's condition forced me to look deeper into HD, and the more I read, the more it did seem like it was a good possibility that David could have this, if only a 'small segment' case that was not as extensive as other babies, hence the later show.

I again took him to the doctor during this time and saw another member of the practice, hoping that maybe she would have some more help.  "Have you tried prune juice?"  That was the extent of her help and she assured me that it was 'impossible' that he had Hirschsprung's.  It was shortly after this time that David lost his health insurance coverage.  There was no way we could afford to continue to investigate with doctors, let alone afford the tests for Hirschsprung's, especially since it seemed so unlikely.  We entered into a strange new 'normal' for us.  I tried lots of various rememdies, none of which worked.  We continued to have to help him go every one to two days to ensure things didn't get really bad.  It's embarassing to admit that this became our normal and we kept just hoping that things would click and that if it was behavioral, that he would eventually be able to go on his own, and if not, that we would find some sort of remedy that worked.  We had no choice really at this point, save going into serious debt over what was deemed an impossibility by our doctors so we prayed and trusted that God would take care of David and help us.

Shortly before his second birthday, Brian was finally able to get us all on a family health insurance plan.  Being a small business owner is really difficult when it comes to health insurance and it is very costly.  We were thrilled that he was able to get a plan that required no referral for specialist visits!  I made an appointment as soon as possible for the local pediatric gastroenterologist specialty clinic that works through the local children's hospital.  This practice is The Place in the area to go to with this kind of thing.  We finally got an appointment.  At the appointment, they were sure it was a learned behavior, despite the fact that it started at such a young age.  It's hard at these appointments when the 'experts' don't know YOU.  I'm sure there are many parents who would take their child into a specialist for some minor, food-related constipation.  Or who don't know how to deal with a child that is refusing to go.  But this isn't us.  The medical community doesn't have much room for 'mother's intuition' and it's a humbling experience when you get lectured on your child's weight rather than on the REAL issue at hand.  She gave us a prescription that would help him go without the suppository, clean him out, and then ordered an x-ray to make sure there was nothing blocking him and that his intestinal shape was normal.  The doctor was quite certain that it was not Hirschsprung's but that "if it would make me feel better", she could order the biopsy.  I took her up on it.

Okay...that's the end of part I for now...as soon as I can I will continue on with the rest of the story...




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