Harvey's Blog

Twins Harvey and Edward Tomicki were born in November 2006. Eight weeks after birth Harvey  was diagnosed with Biliary Atresia (Biliary atresia only occurs about once in every 15,000-20,000 births worldwide. It is a rare liver disease that destroys the bile ducts, which carry bile from the liver to the intestine. Because the bile is unable to drain, it builds up in the liver and damages the liver. The cause of biliary atresia is not known).

Super hero Charlie Munns was a recipient of a graft liver in 2008 from Charlie's mum, Julie-Ann. Julie-Ann has a different blood group to Charlie, so her liver had been deemed incompatible. However, due the lack of availability of cadarevic donors at that time, there was no option except to use a graft of Julie-Ann's liver. Charlie has had to fought through some tough times and proved to be strong to get through most of the complications this type of matching creates. Today, on the face of it , Charlie is looking good, although the compatibility complications still arise.

You may have heard about the break through surgery carried out by Dr Alber Shun using a ping pong ball (Daily Mail). Essentially, the size of the ping pong helps prevent the swollen liver from compressing and restricting blood flow to all the vessels during and after surgery. Well, the very same surgeon does it again with Harvey. The picture shows the actual ball that was used - Yes it was a Slazenger.

In a brief written statement released yesterday, Mr Jobs spoke about the success of the iPhone 3G S launch last Friday, celebrating more than one million units already sold.

"Customers are voting and the iPhone is winning... With over 50,000 applications available from Apple's revolutionary App Store, iPhone momentum is stronger than ever," he said

There must be a better way! Harvey has a nasal gastro tube that runs into his stomach. At night and in the afternoon, the end of the tube  is connected to a pump and drip feeds a mixture of Liquigen and Monogen into his stomach. Harvey has difficulty with fat absorption as any person in his condition would have. The Liquigen contains MCT (medium chain triglycerides) oil which helps in absorption. The Monogen is a milk protein based powder also high in MCT.

The problem is the tube has come out of his nose twice in the last week. As we get into the cold season and and colds and flus become more prominent, a runny nose makes Harvey reach for his tube more frequently.

I often get comments from people that they think Harvey is eating well because his tummy is well rounded and looks full.  This is in fact not the case. The reason why Harvey's tummy appears bloated is because of the condition of his liver, which is contributed by Portal Hypertension. His liver is much bigger than normal and his spleen has also enlarged because of this higher blood pressure from hypertension, causing these two organs to enlarge. 

Many people say they would be an organ donor but that they are scared. I hear this all the time when I am talking to people about Harvey's requirement for a liver transplant or people find out I am an organ donor advocate. The first thing they tell me is that there is just something that isn't "natural" about it and they cannot picture their organs being harvested. My response is that the person will be long gone and won't even care about the body they left behind.

Stephania has been diagnosed with Biliary Atresia, the same disease as Harvey. Stephania had also undergone the Kasia procedure. We were fortunate to meet Stephania, her mum, Val and Dad, Chris at Randwick hospital during Harvey's first stay of antibiotic treatment for ascending colingitus. Like Harvey, Stephania has now been transferred to Westmead hospital, Sydney for managment of her condition and is now on the transplant list awaiting for a compatible cadaveric donor liver.

There are two stages that must be completed to make sure the decision to be an organ donor is recognised by both the family and medical staff. It is extremely important that people who wish to donate their organs register their name with the Australian Organ Donor register. This is the only national register, and having your intentions registered on a driver’s licence is not an option in all states. So to make sure a person’s consent is registered, the process of how to do this is outlined below. This chapter also explains how you will know if you are on the Australian Organ Donor Register.

Harvey has not been able to have a respectable meal for the last 3 months. He appears to have lost his appetite even though we try every day to encourage him to join in and eat around the table each morning, afternoon and evening meal.