Well, this is my first foray into the world of blogging. Hopefully others can learn from what we've had to go through and it makes their lives even just a little bit easier. I just wanted to start by giving an introduction into why I started this blog. I apologize in advance for getting any of the medical information not being 100% accurate as I am an IT consultant. My wife is a nurse and has a much better understanding of the medical side of things. She'll be adding her own thoughts and corrections as we explore whats happened to him on this blog.
In May of 2012 my son Miles was born at 8:39 am, 6lbs 8oz, 20" long, 34cm head circumference, he was delivered by caeserian due to being in a frank breach position by my wife Valerie. I had picked the name Miles as it was a character i really liked from the Dune Saga by Frank Herbert. I never realized how much he would need live up to his name, of which the latin origin is soldier. When he was first born he came out not breathing, but due to the support of our medical team the problem was quickly dealt with. Right from birth he was a challenge to feed. He was the loudest child on the maternity ward. By the time we left people were already saying "oh its just Miles" when they could hear him crying.
We brought him home after 3 days and while a struggle we were coping. I had taken the first 2 weeks off from work for paternity leave. After about the first week we ended up switching to formula (Similac) and at first it seemed to be doing fairly well due to the difficulties in feeding. Day 10 is when it all began. He had been crying more than usual that day (which was significantly more than most babies) and had just woken up from an unusually long nap (4-6 hours, its a little hazy these das). Val was in the middle of changing him and noticed he felt hot to the touch. He was always a pretty hot guy but this was a lot more than normal. When we took his temperature it was reading a little warm but by the time we took a second reading it showed normal. There had been a few other oddities that day and we just had this feeling that something wasn't right. We decided to take him into the emergency room.
After a surprisingly short wait we were admitted. They checked his vital signs and temperature and at the time they all read normal but decided they wanted to take a urinary sample as for some reason baby boys born by caesarian are at higher risk for a Uriniary Tract Infection (UTI), they call this the 2 week curse. While in the hospital they did a first-stage test which looks for the deposits left by bacteria that could indicate a possible infection. This test came back negative so they sent us home saying they would perform a culture test which usually takes 48 hours to come back. 24 hours later we got a call saying that they had found a slightly above normal bacteria count and they weren't sure if the sample was good or not and asked us to come back in for a re-test. We had just put him to bed for the night so we asked to bring him in the following day.
The second hospital visit also had a surprisingly short wait. They ended up re-testing for the UTI and once again the in-hospital test came back negative but they said they wanted to have us stay until the results of the first test came in as they were due soon. Sure enough the results came back positive a second time. At that point they still weren't 100% sure but wanted to not take the risk so they decided to put him on anti-biotics and admit him to the childrens ward. If the second test came back negative they would stop the anti-biotics but otherwise they had a 48 hour head start and we would be looking at 7-14 days in hospital. At the time we were upset that he was being kept in but in hind sight once again this was the right decision to make.
Those first couple days were extremely difficult as we got used trying to be in hospital. He was not an easy baby under the best of circumstances and would typically be described as having "extreme colic", in hospital he was a basket case with IV's all over. I was able to make arrangements with work to only go back part time so I could provide as much support as possible at the hospital. We kept having severe problems with diarrhea and his reflux was getting extremely bad and we were having difficulties convincing the staff that the amount and type of diarrhea just did not seem normal to us. Towards the end of the 14 days on anti-biotics we noticed what we thought was occasional blood in the diapers but it was difficult to tell if it was due to his raw skin or a problem inside.
Just as the final paperwork was being put together to release him from hospital the doctors actually saw him "go" and that the blood was coming from inside and had increased significantly. He also immediately spiked a severe fever. This should not have happened after 14 days on anti-biotics, at 6pm that day (Friday) and the fever/bloody diapers were still happening and the doctors orderered him to be "NPO" or basically no oral food, IV fluids only. Over the last 20 days or so he had just reached the 8 lbs mark. By the end of that weekend when they finally diagnosed him he was down to less than his birth weight of 6.5 lbs. He was also crying & screaming so loudly you could hear him as soon as you got off the elevator which was halfway across the ward and required 3 turns to get there.
During that weekend they ran no less than 5 x-rays and 3 ultra sounds before they were able to determine the cause of all the problems. He was diagnosed with a condition called "Necrotizing Enterocolitus" or NEC for short. In short a portion of his bowels became so inflamed (colitus) that they started to die (necrotizing). It is a pretty rare condition that normally only affects premature babies and no known cause. For it to affect him a full-term baby is almost unheard of. It also has a high mortality rate depending on the severity (25%-50%). The odds of it is ~ 1 in 60k under normal circumstances, or for our city about 1 case every 15-20 years, based on investigating the cases of full-term NEC almost every case involved one or more severe other conditions (e.g. CP, Down Syndrome, etc). Based on various papers showing relative number of cases I was able to calculate the odds of Miles getting the syndrome as a full-term baby with no other health issues to be approximately 1 in 200k, or 1 case in Canada a year.
My wife has been to numerous medical conferences and speaking with some of the top GI & microbiolists in canada and all the medical professionals at home, none of them have seen or heard of a child like him having NEC.
You can find full details of the condition here:
http://emedicine.medscape.com/article/977956-overview
Things i plan to talk about in the future:
post-nec survival mode
GFCF (Gluten-Free Casein-Free) revolution
Fructose Free revolution.
