My last birth involved a placental abruption and an emergency C-section, and this is one of the reasons we opted to not have another child. The other reason came about because when my middle child had just turned 2 years of age he had an allergic reaction to Augmentin, well this is what the doctors concluded following his illness.
It actually started two weeks after returning home from a family vacation to Fiji. I was still breast feeding my 8 month old daughter, my eldest son had just finished school for the 7 week Christmas/summer holidays, and my middle son had just had a big family birthday party which he had absolutely loved. We were toilet training, but the first I knew something was wrong was noticing my son had gone behind the rocking chair in the corner of the room and was squatting quietly with a concerned look on his face. I asked him what was wrong and he didn’t reply but I noticed a foul smell coming from his pull ups. I was concerned immediately as the smell was like nothing I had experienced in the poo department, and the offending bowel motion was runny and jelly like. Initially I considered maybe it was a 24 hour tummy bug and he would be feeling better by the next day, unfortunately this was not the case and we headed off to see our family doctor of the time. The doctor took vitals and recommended continuing with a normal diet but eliminating dairy and adding some form of electrolyte drink to combat dehydration. He suspected he would be better within 7 days.
My son was off his food and very quickly lost weight. After 7 days the diarrhea had not improved and so we returned to see our family doctor. I was becoming quite concerned, my usually bright and active toddler has become lethargic and quietly miserable. The doctor took some blood, which the following day showed the body was fighting an infection and a 14 day course of strong antibiotics was prescribed. A week into the course of antibiotics, there was no sign of the diarrhea getting better, my son had lost even more weight, and his care had become the entire focus for our family. We had gone back to wearing nappies as this was the only way we could deal with the problem and one evening after my son had once again gone behind the chair to go to the toilet I found that the diarrhea was luminous green. This was shocking to say the least, I had never experienced anything like this before and my gut instinct was that it was a serious symptom. We packed up the family, kept the gross nappy as evidence, and headed off to the emergency room at our local hospital. We were immediately referred to go to the main city hospital where we were told our son would need to be isolated in case he had bought back some nasty bug from Fiji. So we arrived at the hospital, at this time it was 10pm, we were taken to an isolation room, and a barrage of testing began by junior doctors. My two year old was not a fan of needles, and watching him go through all of the procedures was heart breaking. I just lived in hope they would isolate the problem as quickly as possible and start a curative course of treatment.
After spending an uncomfortable night in the hospital isolation room the doctors returned the following morning to advise that, strangely, the testing of the poo found nothing! This was quite a hard thing for me to come to terms with, how could luminous green poo be normal. I mean it was not just green it was glow in the dark fluorescent green! The young doctors suggested maybe it was from something he had eaten with coloring. I did an internal roll of eyes at that comment, because of course that was absolutely not the case, he was hardly eating anything and I knew exactly what had passed through his dry and cracked lips, as I advised them as politely as I could muster given the lack of sleep.
Frustratingly, we were sent home to continue with the course of antibiotics because they had discerned he was not contagious with some foreign pathogen and did not need any further hospital care. We didn’t really know what to do from there. The diarrhea continued, the weight loss continued, and I could see him fading away before my eyes.
In 2004/05 the internet was around, but we only had dial up speed, and the amount of data available was nowhere near what is available today. What I did find on the net was that in Australia there was a children’s hospital that was considered one of the best in the world. The next day we got on a plane and within 48 hours we fronted up at the emergency department. We were seen by a pediatrician, and not a junior doctor, who quickly ascertained we were only visitors to Australia and although he understood we had come specifically to be seen at the hospital that was not the way things worked, without being Australian residents our son could only receive treatment for an accident or life threatening condition, not a chronic and ongoing one. This was disappointing to say the least because here in Australia we had got to see a pediatrician straight away, not doctors still in training. I gathered the process would have been completely different had we been allowed to have our son admitted to that hospital. But the trip was not a wasted one, the pediatrician listened to our sons history and put into writing a plan we should follow upon our return to NZ.
Please don’t get me wrong, health care in NZ is top notch, but in my experience if the cause is not usual or obvious, then it becomes necessary to stand up to the medical professionals and make certain you are not pushed to the side or put into the too hard basket. In NZ medical insurance is not necessary, perhaps if it was, every test under the sun would be completed straight away, but it is not, and as such the medical professionals are beholden to their superiors, who are then beholden to the government to make sure that all testing is absolutely necessary because there are budgets to be met.
The Australian pediatrician advised us to get photos together to show how much my sons condition had changed in just a very short period, he told us to write a diary of symptoms, and he also told us not to take NO for an answer. “your son needs to be admitted to hospital for ongoing testing to get to the bottom of his illness” he stressed how important it was that we do this immediately as he considered our son to be very ill.
We left deflated, but emboldened. We returned immediately to NZ and fronted up at the children’s hospital with everything the Australian Pediatrician had advised us to bring. Amazingly our son was admitted to a ward and the following day we got to meet with our first NZ pediatrician. I sigh at this moment, as I would like to be able to say that the immediate care we received was wonderful, and all necessary tests were completed straight away. But this was not the case, and after 5 weeks of being in hospital my son was still getting no better and the only testing we had received were blood and stool.
We were following a stressful routine of my husband staying over night in hospital, me arriving in the morning with our other children, and swapping so I could take over the day shift. My husband would then return to take our eldest son to school, and proceeded to take our 9 month old daughter everywhere with him that his job allowed him to. I was still breast feeding so this was quite hard on my daughter being reduced to only morning and night time feeds.
My son, was by this time, gravely ill. He could do little but lie in my arms all day watching David Attenborough; his favorite nature documentary’s. His stools were mostly mucus, and when I say mucus I mean the exact same snot that comes out of your nose when you have a infected head cold. It hurt him terribly to pass these bowel motions and on one terrifying occasion his bowel prolapsed and I watched my little two year old boy’s bowel come out of his anus whilst he screamed in agony. The nurses manually reinserted the bowel. They told me his bowel had become weak from spasms and whatever was causing the diarrhea, and my son received regular morphine as pain relief from then on.
My son had had so many blood tests that his little veins had collapsed and inserting a needle had become problematic. On the last occasion they tried to insert a needle they took us to an isolated room at the end of the corridor surrounded by empty rooms, they gave my son a drug to make him forget what they were about to do, I cant remember the name of the drug, but it immediately made him spaced out and he became very frightened. I stood over him singing, trying to do anything to take his mind off the fact they were jabbing him with needles everywhere to try to get a needle into a vein. It didn’t work and we went through that terrible horror for nothing.
The hospital decided it was time to insert a picc line into his chest so they could administer morphine intravenously and they decided that because he would have to go under anesthetic for this to be done they had might as well do a colonoscopy at the same time. Within an hour of my son returning from surgery the pediatrician showed up with photos of what the inside of my sons bowel looked like. There were what looked to me like welts or blisters all through his bowel, the doctor said they were ulcers, but that they were not the same as the ones you find in ulcerative colitis or chron’s disease. He said they considered my sons condition to be very serious and that if he did not respond to medication there was a chance he might not get better. The medication they were going to put my son on was a steroid, they hoped that this might assist with the inflammation. With no other way of knowing what to do for my son I was eager to try anything.
At this stage our family was exhausted. I had spent no real time with my husband or my other children for the three months we had been in hospital. What would be considered abnormal for most families had become routine for us, and as terrible as it might sound, in some ways I envied the parents of the children on the ward with cancer, because at least they had a proper diagnosis. The not knowing, the watching my son in agony every day and needing regular morphine, the look on the nurses and doctors faces every time they walked into the room that told you they did not hold out much hope, was soul destroying.
At last one Monday morning something different happened. A visiting specialist gastroenterologist from Melbourne, a no nonsense man of Chinese origin, walked into our room and sat down on the bed next to my son. He listened to everything the five senior doctors who walked in behind him had to say on my son’s illness and his time in hospital, he reviewed my son’s notes there and then in front of us, he completed a physical examination of my son, he spoke to me kindly and said he suspected he knew what was wrong with my son, he turned to the five senior doctors and told them to test for Clostridium Difficile, he advised they would need to test several times a day for several days to find it, and then he turned to me and told me that if what he suspected was correct then there would be a long road to recovery ahead because the infection had been left untreated for so long, but there was a good chance that my son would make a full recovery. I was so grateful and thanked him profusely. I heard one of the doctors saying as they left the room that he thought C-Diff only infected the elderly, the specialist gastroenterologist replied that it is extremely rare for a child to become infected but that he had seen three cases in his career of under three year olds having Clostridium Difficile.
I was very emotional after that visit and I went to the bathroom and cried tears that I had held inside me for months. I had had to be so strong, to show any weakness at all to me was admitting defeat, and I couldn’t let myself do that. I rang my husband from the bathroom and gave him the news, finally we had some hope, and it felt amazing.
The specialist was bang on, it was C-Diff, and it did take over a year for my son to be completely clear. Three lots of the strongest dose of Vancomycin was administered. After each of the first two times we thought we were clear, but within a couple of months the symptoms returned and another lot of the medicine was required. The third lot did the trick and he has been symptom free every since.
We did also on the down time from the medication undertake a probiotic regime, which at the time was still considered an out there kind of thing to do. We also had a year off dairy and gluten to give the bowel a complete break from anything that might cause irritation. It was an interesting time, we all went through that same diet, to make it easier when cooking, and to be solid as a family behind our son 100%. During that year we took some time to travel around Australia with our land rover and caravan and the most incredible event occurred when we went to place called Monkeymia, where wild dolphins come in daily at the same time to inspect touristy humans and to let us experience this amazing contact with them. Usually the wild dolphins swim up and down the beach viewing all of the people waiting expectantly to see them and they know the guide so they interact with that person. On the day we were there they came to my son and they turned on their sides and they looked at him and him alone with their beautiful eyes, it was as if they knew he needed to be healed and they called to him with their whistles and clicks. It was the most moving thing I have ever witnessed and something the guide said she had never seen before.
That was a miracle as it was when that man came to us and diagnosed our son so effortlessly. We are all so forever grateful for our miracles.
My son is now 14 years of age and since that time has only had two lots of antibiotics administered, one for a dog bite and the other for an infected cut, and he has the healthiest immune system of any of us! We also now have medical insurance that enables us to receive treatment not just in NZ but also in Australia.
Of course the hospital collapsed my sons brachial artery when they removed the picc line, which can happen, unfortunately, and as a result he developed over time dysgraphia – a difficulty with hand writing and some co-ordinated activity. This has in no way stopped him from becoming the academic superstar that he is today, completing his GCSE’s a year in advance, and in the top 90 percentile in every subject. He is our miracle boy who is quickly becoming a dedicated, mature young man, but who still has his childhood teddies on display in his bedroom, and who is the most patient, kind and caring teenage boy I know, he will be an amazing big brother to our new addition, just as his big brother was amazing with him!