Sam's Latest Condition

Sam is in stable condition right now. But the doctor give us an option to do a surgery. The objective of the surgery is to 'cut' all the tiny vessel in the liver so the liver hopefully can shrink sooner. We are praying now to know God's answer and will. Please pray for us and Sam.

Regards,

Richard & Hellen

Letters

28 October 2008

To whom it may concern.

Dear Sir/Madam

SAMUEL RYAN RAOZEN

NUH Ref Number : XJ3154931

4 months old Indonesian boy with haemangioendothelioma of the liver with

heart failure.

Samuel is a 4 months old Indonesian boy who was diagnosed to have haemangioendothelioma (abnormal blood vessels) in his liver 9 weeks ago and this has caused him to go in to heart failure and needing respiratory support with the ventilator. He is improving with 3 embolisation (non-surgical medical method to block) of the abnormal blood vessels but he will likely to require another 4 weeks of ventilation support.

Samuel is currently a 4 months old baby boy from Indonesia. He presented with progressive heart failure and a rapidly enlarging liver in Indonesia. Multiple tests done did not reveal his exact diagnosis and hence there was considerable delay

in Indonesia. He turned blue when he was feeding soon after birth and he had progressive enlargement of the abdomen over the first few months of life. We initially thought that he may have a form of tumour affecting young infants (infantile neuroblastoma 4S type). He was medically evacuated to NUH about 7 weeks ago on 17 August 2008 on ventilator as the medical evacuation team found that he was gasping and n heart failure.

On examination in NUH, he was in heart failure and massive enlargement of the liver to 10cm below the right costal margin (normal is about 3cm), this is almost as large as an adult liver! He had also a strange bruit over his abdomen and a small haemangioma at his back. His heart was markedly enlarged (See figure 1) with gallop rhythm confirming the heart failure.

We finally diagnosed him to have massive hepatic haemangio-endothelioma with intractable heart failure.

Figure 1. Samuel’s Chest X ray at initial presentation which shows a massively enlarged heart due to his heart failure. His liver is also exceedingly large displacing his intestines to the left.

2-D echocardiography (18/8/08 and later 3/9/08) showed no structural abnormality of the heart with good fractional shortening of 35%. This shows that his heart is normal but is unable to cope with the massive load. We started him initially on oral prednisolone to attempt to shrink the haemangioma with little success. We added escalating doses of interferon-alpha

based on the AIEOP experience Med Pediatr Oncol 2002 Feb;38(2):118-9 in view of the lack of response to steroids. The liver size remained about 10cm below the costal margn although there was improvement in the heart failure. The surrogate haemangioma at his back grew larger despite the interferon-alpha. In view of the laci of definitive improvement, we decided to attempt localised embolisation. 

Haemangiogram carried out by Prof Lenny Tan, our inventional radiologist showed massive shunting of blood vessels from the celiac and superior mesenteric arteries to the abnormal haemangiothelioma of the liver (Figure 2). We attempted 4 weeks of prednisolone and escalating doses of interferon-alpha therapy which has been previously shown to be successful in some patients. But there was little response. He remained on very high ventilator setting despite therapy.

My Pictures

SAMUEL, A BABY BOY WITH 'BIG' HEART AND 'BIG' LIVER

Hi ! My name is Samuel Ryan Raozen. I am a 6 month old baby boy born in 28 June 2008 in Bandung, Indonesia. I was diagnosed with rare disease, namely Hepatic Hemangioendothelioma. It is a tumor of blood vessels that makes my liver to swell to almost a size of adults.

The Big Liver makes my heart works so hard that my heart also becoming swollen.

When I was 1 month old my parents noticed of my big tummy. I was treated for 2 weeks in my home country then was evacuated to National University Hospital, Singapore where I was diagnosed with the blood vessels tumor. Since it is a rare desease in the world, my case become the first experience for my doctor here in handling Hepatic Hemangioendothelioma.

Doctors said that I have congestive cardiac failure, hypotyroidsm, respiratory distress and bronchomalacia. Due to prolong staying in ICU, my parents now facing financial difficulties.

Despite all conditions, I really want to survive through this all. I want to live. And I want to live a fruitful live that I can grow up becoming a big happy boy. Please pray for me

a BIG THANK YOU from little Samuel

Samuel is staying in PICU, ward 46A, main building, National University Hospital, Singapore.

Read My Whole Stories...

My Whole Stories

Hi! My name is Samuel Ryan Raozen. I am a 6 month old baby boy born in 28 June 2008 in Bandung, Indonesia. I was diagnosed with a rare disease, namely Hepatic Hemangioendothelioma. It is a tumor of blood vessels that makes my liver to swell to almost a size of adult's. The Big Liver makes my heart works so hard that my heart also becoming swollen.

Initially when I was 1 month old, my parents noticed of my big tummy. My cry was weak and I was breathless. I was treated for 2 weeks in my home country where the doctors mistaken my symtoms for viral infection and treated me as they deemed appropriate. They did surgery on my hip where they put a plug to take out some of my blood and put in some new blood. Each time is 5 ml blood only and it took 4 hours to exchange my blood with new blood donated by my uncles. Then my body was swollen due to fluid retention. I was looked chubby while I'm in fact lossing weight !

After doctor realized that it was not viral infection, I was evacuated to National University Hospital, Singapore where I was diagnosed with the blood vessels tumor. Since it is a rare desease in the world, my case become the first experience for my doctor here in handling Hepatic Hemangioendothelioma.

My liver is so big that it fill up much of my tummy space. It pressed my lungs and makes me difficult to breath. It also makes me couldn't drink milk properly, so I need to use feeding tube. I drink limited volume of milk with a machine called feeding pump to make sure the milk goes into my body slowly.

Besides the liver, I also got Hypotyroidsm. Tyroid is a growth hormone. A child surely need it to grow up. Lacking of tyroid is harmful especially for the brain who really need it to develop faster in first year of chilhood. Hypotyroidsm means my body lack of tyroid but it is not because of my tyroid glands being naughty. My glands produce a proper amount of tyroid but the "naughty" tumor take the hormone for himself. It makes my body difficult to grow. Doctor's term is 'I was failure to thrive' while the blood vessels in liver keep growing very fast. You must be agree with me that the tumor is VERY naughty !

So, the good doctors here decided to put some coils into naughty blood vessels in my liver. it will block some of the vessels so my heart wouldn't need to work so hard. They did this procedure called 'Embolisation' three times. When my Oncologist saw the picture of my liver blood vessels, he was very surprised. He said there are 3 arteries go to my liver instead of 1 in normal person. (Well, I know I am special in certain way). Normally the doctor only need 2 or 3 coils in one embolisation. But guess, my liver need so many coils you could not count when you see the picture ! By the way it is all sucessfully done, oh Thank God !

If you see my picture maybe you notice that I use tracheostomy tube. The doctor found my airways pressed by my 'BIG' heart makes me depend on ventilator machine. So, when I become 4 months old doctors open a hole on my neck and place a tube for me to breath. Now I am more happy as I can breath easier. Doctors said hopefully my airway muscle will become stronger when I grow up so I won't need the ventilator and even trachea tube. Well, I certainly pray and believe that I will.

By the way, my health has clinically improved as my body response to chemoteraphy and medication I took. The doctors still want me to continue my medication until I reach 12 or 18 months old since this kind of tumor will regress itself after baby like me reach certain age. Oh, how I want to grow up faster !

Sadly is I've been staying so many months in ICU. Mid November 2008 I was very happy as I can go home to my granduncle's house where we can temporarily stay in this foreign country. But then I need to rushed back to the ICU at 3 December 2008 since I was turned blue 3 times that day. The Oxygen and heartbeat monitor keep alarming because of my condition dropped suddenly. My mommy and auntie did CPR on me while I was gasping for help. I can hear them praying while they keep pressing my chest and blow oxygen through an ambubag " 1...2...3... Jesus help ... 1...2...please...Jesus...3..."

Since that day, I stay in ICU again. Hmmm, I tell you friends, to those who never been in hospital and might think is quite a cool place where every body visit you with the doctors and nurses being so nice taking care of you. I tell you staying 1 night here is really like a year. And if you have to, don't stay too long in hospital like me. It is a nightmare.

Well, after all GOD is keep helping me out. There was also one time in hospital where my ventilator accidently loosened. My heartbeat suddenly dropped to 90 beat/minute, then 50, 20 then stop. Really, it was stop. No more heart beat. You can ask my doctor if you don't believe. Doctors gave me adrenalin shot and did resucitation. And I back my heartbeat again ! It was really scary, but whew ... I feel alive again. Friend, you must really, really - I reapeat - really - with big capital - REALLY grateful that you can breath easily. Your respiratory system is such a Miracoulous Gift from GOD !

Now that my mom and dad facing financial difficulties for paying my hospital bill. When I was born they've asked 2 insurance companies to issue insurance policy, but unfortunately they only accept if a baby already being 2 months old. Then I was sicked before getting 2 months, so no insurance want to cover me now.

I attempt to come up with the costs for medical care, mom and dad have exhausted all their resources up to the point of placing our only house in Indonesia as collateral for the loan ( with an interest rate of 12.5% apr). This is the fastest way of getting cash to pay the hospital than selling the house in this time of global crisis. Wow, what an intelligent way of saying for a baby like me ! You know better about the global crisis than me.

My dad also borrowed a lot of money from our relatives. My parents are willing to give up anything to help me but I know they could not afford anymore.

Mommy said we have paid a total of SGD 100,000 to the hospital and we have at least SGD 80,000 of debt to hospital. It still mounting up as doctors could not know when they can discharge me.

The hospital want us to pay the first SGD 40,000 on 8 months which is very difficult for my parents to meet. And the rest of the bill to be paid as soon as possible.

Now, together with many relatives and friends, mom and dad are applying to many foundations for helps.

Uncle, Untie, Friends and whoever read my story here, I really want to survive through this all. I want to live. And I want to live a fruitful live that I can grow up becoming a big happy boy. I want to become a man who can live a normal life like you and furthermore I want to help people as I am helped by many.

I have dream of helping sick and unfortunate children.

Please pray for me.

A BIG THANK YOU from little Samuel

Samuel is now staying in PICU, ward 46 room 10, National University Hospital, Singapore.

For those you would like to help by donation, you may do by transferring to below accounts. No matter how much is it. You have been a great great help for me and my family.

Richard & Hellen Raozen

Jl. Batununggal Mulia II / 18

Bandung - Indonesia

Richard phone : +62 22 7514465 / +62818614405 (Indonesia)

Hellen phone : +65 98078281 (Singapore)

Donation can be made directly to National University Hospital as follows:

1. Account Name - National University Hospital
   
2. Bank Name - Citibank Singapore
   
3. Account No - 0-820551-028
   
4. Bank Code - 7214
   
5. Branch Code - 001
   
6. Branch Name - Centennial Tower
   
7. Swift Code - CITISGSG
   
8. Bank Address - 3 Temasek Avenue #11-00
   
9. Patient Name - Samuel Ryan Raozen
   
10. Case No - 1580640351 Z
    

For Donors who are giving by wire transfers :

1. Please write Samuel's name and Samuel's case number on the transfer instructions so funds can be allocated to Samuel.
   
2. Please fax your transfer form to Ms Anita of NUH Finance Dept at +65-6777-3248. This is so she can tally the amount of donation. For clarification you can call Ms Anita at tel +65-6772-5331 or +65-6772-5332.
   

For Donors giving in CASH/ CHEQUE/CREDIT CARD, please proceed to NUH Business Centre on the 6th floor of NUH Main Building. Ask for Ms Anita. If she is not around please tell the other staff on duty that you are donating to Samuel Raozen. They are all familiar with his case.