Case Closed (for now)

Ben is bag free! Hooray!

On the 28th of October Ben went into the WCH to have his colostomy closed. That is, all bowel traffic has now been diverted back through its natural course and things seem relatively ‘normal.’ I say that tentatively of course, it’s still early days.

Originally we thought we were in for a two night stay at the hospital, but it turns out that a 5 night stay is probably standard. The procedure itself is a simple(ish) operation for a surgeon used to handling complicated thoracic cases, but the recovery took a little while. Additionally, Mr Kirby covered Ben with Timentin Antibiotic’s to reduce the infection risk. I’m told this course usually carries a minimum of 48 hours via I.V.

Crashed on Mummy's bed

















Ben started out by fasting from solids and milk from Monday night at 6pm. On Friday he was allowed 40ml of milk every four hours. His first solid food after this was Saturday night at 6pm, and was one small mashed banana. 5 days with no solids.  Simon’s Dad could hardly believe that it was a possibility. “When are they going to feed him???” he kept asking.

As you can imagine, taking the joy of food away and replacing it with an empty stomach and low blood sugar levels made for a pretty unhappy chappy. That being said, Ben wasn’t completely unbearable. Exhausted, hungry and wobbly, but much better than one would think.

The prerequisite for Benjamin coming home was that he needed to have a bowel motion. Imagine the strange looks I got when I started clapping in the play room at the hospital when it finally happened! Who ever thought there could be joy in a soiled nappy?

Ben and his first taste of solids in 5 days..mmm Banana!

We’re all home now. Ben has an appendectomy like scar/wound on his tummy and very little pain. He seems to be glad to be home with the whole family, and in his own bed in a quiet dark room. (As am I!)

It’s here that I reach out to the staff at the WCH and the surgical team that look after Ben. Mr Kirby, his registrars, the Newland ward nurses and our gorgeous S.T. nurse Lisa Kimpton who looked after Benjamin through this journey and have given the most amazing follow up care. Not once have we been left with unanswered questions, we’ve always had the support we needed and have been able to rely on the fact that the medical/surgical part of his care is elite. Yes, I believe the word ‘elite’ covers it. Thank you all.

Welcome home Benjamin ♥

The Last Of The Big 3

Two sleeps. That’s all.




In two sleeps Ben will be emancipated from his colostomy bag and for the first time in 16 months we’ll actually be changing dirty nappies! (Well, that’s the plan!)

The closure of a stoma is a relatively straight forward procedure, and we should expect the recovery process to be reasonably quick. Perhaps only two nights stay in hospital if all goes well, and then a little bit of caution whilst the wound heals on Ben’s stomach.

I am more nervous about this surgery than I thought I would be. In September Ben had is Endorectal Soave Pull Through procedure, which by rights is the one that we should have been most concerned about. Around 12cm of his diseased bowel was removed. This week’s surgery is like ‘pulling off a band aid.’ This is the procedure which will test his bowel function and truly show us how successful the September operation was.

We can now understand how parents feel frightened and concerned about their children needing a stoma and colostomy bag. There are so many aspects to looking after a child with a special need, and a stoma is no different. You have to learn to manage the bags, work out which appliances, creams and pastes work best for your child and in older children you have to council them through the social aspects of having a bag.

It is only now though that I understand why people feel ‘attached’ to their bags. I’ve heard people refer to them as their little ‘security bag’ and that too is understandable. In Ben’s case it provides almost certain safety against bowel infection and eliminates any previous discomfort he had.

Without the colostomy bag we’re stepping into relatively ‘unknown territory’. Ben is possibly now more at risk of getting Enterocolitis again, and more susceptible to tummy bugs than his peers. Some parents choose not to put their kids with Hirschsprung’s into any shared care facility until they’re a little older and stronger. Then there’s the diet. Some kids need a high fibre diet, some need a low fibre diet and some can eat anything they like within reason... All these new scenarios we need to consider. So bring it on! Let’s do this... Without risk there is no gain, and Benjamin has a lot to gain!


For those who are curious about what a stoma & colostomy bag might look like, we have attached a small picture below. Some people are alarmed at the look of a stoma as it's quite red, looking a little like a wound.  Stoma's are much like the dermis on your lips and feel as such. The word stoma is Greek  for 'mouth'.

Pulled Through - Like A Champ!

Who would think this happy little man sitting in my lounge room had surgery which took over 4 hours just 3 days ago?  Not I.   He handled the whole process like a true champ - including fasting for over 24 hours and then only being allowed a little taste of milk 24 hours after surgery. I can proudly admit that I would have been crying blue murder had I been subjected to the same treatment. Ben was more interested in the foreign toys in the waiting area, the television at the end of his cot and the myriad of goings on around him.

Ben was quite settled through the first night until around 2am, which is when I suspect he had his catheter pull through his urethra because the tape used to secure it to his thigh had come adrift during one of the four bedding changes in the night.  Poor little man was understandably uncomfortable after that.  At 8am the next morning Mr Kirby promptly relieved Ben my removing the drain, and so started the day.

Day 1 after surgery was hard on Ben to say the least. He was exhausted, running a temperature and sore. His wound was internal, so it's hard to know what exactly might of been causing the bulk of the discomfort - but we have an idea that some of it may have been from the wayward catheter. Pain relief was via an IV drip and also orally, interestingly we could note when he was about half an hour away from the orals being due because he became increasingly irritable. I suppose you could say it was validation that  all the medications were needed, and not surplus to requirement.

Ben was allowed a little bit of milk (around 40ml every three hours) for the first 24 hours, it was then increased to 120ml and then 180ml.   Finally on Friday evening (the 18th) he was allowed some solids. A banana of all things!  The holy grail in a yellow peel - we're still not sure that fruit has ever been accepted with such happy anticipation!  

Ben's temperature subsided, and his pain seemed to be less than the day before so his Fentanyl IV was turned off. A great step in the right direction (which is North if anyone is asking, as in home is North from Adelaide!) and it meant that he could be freed from the tether of the IV pump which now only had to be connected for intermittant doses of antibiotics.

Friday did bring some fun and happiness though, a visit from Ben's Aunty and his little cousin Emma - but that's not all. Captain Starlight!!!   Puppets, stickers and balloons were the order of the day, and how wonderful that those people are!!!

Cousin Emma with Captain Starlight

On Saturday morning the 19th, Ben showed good signs of hunger and thirst. So much so that he drank himself to overflow (which was promptly deposited all over Daddy's new t-shirt in the foyer of the Newland Ward) but he then felt and looked better directly after.  Simon took a phone call from Mr Kirby - if there was no temperature, if he was eating and drinking, then he'd be happy for Ben to go home! So after a coffee and a trip to the hospital's deck playground for gorgeous and patient Miss 3, we all happily piled into the car and tootled home!  Hooray for own beds and surroundings!

Ben's now home 3 days post Soave Endorectal Pull Through surgery, and whilst he's very tired and still a little slow on the eating, he looks very well!  

All hail the surgical team at WCH!!!!   All hail the nursing staff at WCH!!!!  All hail the love and support from friends and family!!!!

It's A Date

I'm constantly amazed at how raising children can bring such stark contrasts in emotions in such quick time lapses.  Yesterday my mobile phone rang, and when I saw the calling number listed as 'Unknown Private' I felt a lump in my throat. I knew it would be Meg from admissions at the WCH arranging Ben's next hospital stay.   Not two hours later, Ben took his first steps!  

Ben's next operation, the Soave Pull Through, has been set for September 16.  We're hoping for a 5 night stay in hospital, but have been told to expect more.

As one would expect, we're quite nervous about the outcome of the procedure.  This will be Ben's 5th visit to theatre with Mr Kirby, and each time carries a certain amount of anxiety. Because of the nature of this next procedure, and the higher risk of post operative complications, the level of anxiety is understandably increased.

We have friends in the HD community that have paused their children's journey at the stoma stage. That is, they have decided to keep the colostomy bag and not go on to have Pull Through surgery to avoid the risk of post-op complications.  And lets face it, life is good with the stoma.  Ben eats, he's not at risk of enterocolitis, his weight gain has been great and he's happy.  With the help of his amazing Stomal Therapy Nurse (STN) Lisa Kimpton we've learnt to manage the stoma and his appliances with little fuss.

So why proceed?

• To offer Ben the best chance at a 'socially normal' life.
• Because we have confidence that Ben's surgeon is superior to his peers in the surgical treatment of bowel conditions.
• Because you have to have faith sometimes that a little luck is on your side!

The Benefits of a Colostomy Bag

Before Ben had his stoma made, we were terribly careful of what foods he ate.  We've been able to relax the rules a bit of late and here's proof that our little man has turned into an 'eating machine'.    Can you say 'Soggy Sao with Vegimite on Top?!?!?'

Ben's Journey So Far

Benjamin was born on June 11, 2008 by c-section. In hindsight, the elective section was a life saver because Ben's paediatrician was in theatre and had his careful eye on Ben right from the start... this new little baby boy looked like he was all head and no body. A scrawny looking lad at 6lb, 3oz and 47.5cm long. Not a tiny baby by rule, but just looked a little 'runty' somehow.

Ben never passed the meconium that most babies move within the first 24-48 hours of life, but more than that, he wouldn't feed and just seemed to have been born 'sleepy'. In his first 24 hours of life, under the caring eyes of the nurses in Ashford's nursery and the concern of his paed., Ben had a NG (nasal gastric) tube inserted for direct feeding. Unfortunately, this caused vomiting and a bit of bloating in the stomach.

Aspirating the NG tube showed bile in his gut... this was a good indication that he just couldn't tolerate milk.

Ben's doctor came in to tell us that he was going to x-ray his stomach and possibly send him off to the Woman's and Children's Hospital. Once the x-ray showed a blockage in the bowel, we were packed up and sent off! What a scary experience.

Anyone who has had a sick child bundled up and sent off in an ambulance, no matter their age, will tell you that it's one of the most frightening things you will see in your lifetime. Ben went from the safe and comfortable humidi-crib in the quiet nursery at Ashford into a big Mansell Power lifter (a specialist neo natal intensive care crib) with a retrieval team to escort him into the PICU at WCH. No room for Mum and Dad with all that equipment, and for a while there wasn't going to be a bed for me at WCH either. The drive seemed to take forever, and then finding him once we got to the Woman's and Children's felt like the longest, desperate search in my 29 years. The halls seemed dark and long, and I was being pushed in a wheel chair with two flat tyres so it was awfully slow and painful exercise for both Simon and I. No one seemed to know how to get to PICU, finally we found a PSA who happily led us all the way to our little man who we hardly knew.

So there, splayed out on some sort of 'work bench' with monitors and leads which looked like they could control a sophisticated robot, lay our little day old son with a big puffy belly. He looked uncomfortable, but sound asleep. I'd love to tell you what happened next, but it's a bit of a blur. Phrases like 'meconium plug', and 'biopsy', 'highly suspicious of something more serious', 'we'll see what he does' were possibly mentioned, but I couldn't say for sure.

In the next week, Ben was given suction biopsies, x-rays, and ultra sounds. He was then given three dilatation's over three days to help evacuate his bowels and plenty of blood tests and time under UV lights for jaundice. We found the stress levels went down a little for us when Ben was finally moved down to NICU. The care was still intensive, but the mood was a little more relaxed and the nurses had a bit more time to explain what was happening with our boy and why.

 Ben's surgeon, in the first meeting with us, told us that he was in high suspicion that Ben was suffering from Hirschsprung's Disease (HD). The biopsy was negative for this, but it unfortunately also ruled out the notion of the much less serious 'meconium plug' theory.

After just a little over 8 days, which felt more like a month, we were eventually discharged. Ben continued to grunt uncomfortably in his sleep, and look like a little old man. I was never completely happy that his nappies were normal, and at 10 days old we had a check up with Ben's original paediatrician Chris Munt at Ashford between his 'real' appointments. He was nice enough to fit us in because Simon and I weren't confident we had a well baby. Dr Munt agreed and sent us back to the WCH via triage. Our good surgeon was overseas, but his registrar recommended we make an appointment with him as soon as he got back. We did, and Mr Christopher P. Kirby took us very seriously and had Ben back in for a biopsy that same week.

So then we had a diagnosis. Ultra Short Section Hirschsprung's Disease.  HD Info HERE  (This diagnosis is later changed at about 1yr old - more on that later).

The plan of attack, since only a very small amount of bowel was affected, was to give Ben a posterior Rectal Myectomy. Basically, splitting of the muscle that spasms closed. Ben had the surgery at 4 weeks old with a 5 day stay in hospital, and for a while, this surgery was a success.

Ben continued to be frustratingly close to 'normal', but the slightest slip up with the diet and we'd have to work so hard to help him 'disimpact' his bowel. From 6 months old he was on a daily adult dose of laxatives and we we're very strict on what he ate and when.

In April 2009 Mr Kirby decided enough was enough and that he'd go back to basics and do another biopsy in May. So on May 27 Ben was found to have more HD bowel. Approximately 10cm+, rather than the original 3-5cm first suspected.

Why was the biopsy wrong on two accounts??? There are a few theories, but most likely is the theory that doing any surgery on HD bowel before 6 months is a trifle risky as some ganglion cells die off right up to about 6 weeks of age. Ben had his original myectomy at 4 weeks, there's every chance more cells died off after this date.

Always thorough, Mr Kirby had Ben come back in for a higher biopsy to make sure they had tracked every cm of HD bowel. This was done the day before Ben's 1st birthday, and we came home and celebrated his 'parole' from WCH with his very first taste of Ice Cream at Nan's.

So 10cm of HD bowel is just a little bit more than can be treated with an extension of Ben's initial surgery. This meant two things. Both very scary prospects for Simon and I. 

1. Ben would need a stoma made to let his bowel recover from a year of being over stretched, giving it a chance to 'heal'.

2. Ben would need 'pull through' surgery.  Simply put, the HD bowel would need to eventually be cut out, and the good bowel needs to be pulled down and re-sewn. Hence, pulling it through.

So on June 24 Ben had his stoma made, a transverse loop colostomy, and now wears a bag which his dear 3 year old sister calls his 'colostoma'. Since then, once the initial pain of the stoma surgery subsided, Ben has been the best we've ever known him to be. He's a happy little man who's so busy I just know I'm going to be in big trouble once he starts walking! His weight gain is improving and I am sure he's taller. But most of all, he can eat without consequence.  He hasn't refused a meal since June, and sometimes eats more than his Dad! I guess he's had some catching up to do.

Now we wait...

and pray.....

Good technique will only get the surgeon so far, and the rest will be good luck. Sometime in late September or early October Ben will go in for his pull through surgery. Sometime after that he will have his stoma closed/reversed and we'll then see how his 'pipework' handles pressure!