Neowell saved while hunt continues for O+ R1R1 JKA

14 January 2013, Kota Kinabalu, Sabah—Neowell Vann Houtton, the 12 year old boy suffering from major thalassemia who needed urgent blood transfusion of the very rare blood type O+ R1R1 JKA has received two blood transfusions Saturday and Monday bringing his HB level up to 10.4. Normal levels are around 13 to 14 and last week Neowell’s level dropped to 6.7.

“He is now immediately out of danger thanks to hundreds of donors who responded to our appeal as we managed to retrieve the correct blood type and I thank the donors and the media and bloggers for saving his life,” said Selly Onong, the boy’s mother.

Donors who are O+ blood types are still encouraged to visit Hospital Likas 4th floor to test whether they are O+ R1R1 JKA as the hunt continues for regular donors for Neowell, who needs monthly blood transfusions for the rest of his life.

“His blood is extremely rare and every month we go through the heartache of hoping there is blood for him. This continuous lack of blood is crippling my son. The hospital refuses to release the records of matching donors for Neowell and I rely on the public to phone me at 0107826955 or Nilakrisna James at 0168459287 to let us know if you are O+ R1R1 JKA and willing to become a regular donor to Neowell. In the end, we have no choice but to create our own private database of willing donors. Please test your blood at Hospital Likas 4th floor and find out your blood type sub-categories and let us know,” said Selly.

Meantime, lawyer and activist Nilakrisna James, who assisted the family last week with the public press appeal, has stated that the hospital procedures and system need urgent improvement in cases where blood transfusions are needed in accident emergencies or critical low HB levels.

“This entire episode has revealed major hiccups which the Ministry of Health must address because these procedures can be fatal for people like Neowell. The following procedural problems were identified:-

1. Blood donors can only donate blood at hospitals on weekdays till 5pm. This eliminates willing donors who are working adults or those on shifts who can only donate at nights and at weekends. This is why we are critically short of rare blood types in our blood banks. Blood donation at hospitals should be 24/7.
2. The hospital mobile blood donation unit is in operation but the public is unaware of where the mobile units go to and the public needs to be informed where the mobile units are at all times.
3. The hospital does not have or are unwilling to form a database of matching rare blood type donors to patients requiring regular blood transfusions like Neowell. In cases of emergencies like this the hospital depends entirely on the supply of the generic blood bank and where they have no supply, they have told Selly Onong to go and find her own donors. Selly has two young children, one of whom is critically ill and unable to walk when sick. She has no regular job because she needs to care for her child 24 hours and no private transport. How is she able to find her own database of donors with these blood types? Hospital staff should be more sensitive to her plight and not simply hurt people with these remarks and put them in desperation. This is why she comes to people like me to assist her with press appeal and no one should have to resort to these methods! The hospital should be able to contact donors on their database of rare blood types and call them up to donate for regular blood transfusion cases like Neowell or in emergencies. Their system is seriously putting lives at risk.
4. Over the weekend Neowell was informed that his blood type has been identified and he could have his transfusion in the normal ward. However, his files were under lock and key and the thalassemia unit was apparently closed for the weekend. If it wasn’t for our constant appeal to good hospital staff Neowell would not have been able to retrieve his locked files on Saturday and would have had to wait till Monday for his blood transfusion. Files should be accessible 24 hours especially for those with a history of regular monthly blood transfusions because they may need emergency transfusions at any time. And all units of the hospital should be open 24 hours. Appoint more hospital staff on shifts and don’t let this be an excuse to let people wait and die.”

Nilakrisna added, “This isn’t the first time I have witnessed a terrible Malaysian health care system. My husband had an accident and needed emergency dental treatment to cover up an exposed nerve in his gum. The public hospital said we had to wait for a student trainee several hours. The private hospital next door said they have no dentists left on their database. I had to resort to alternative methods like calling up my own connections of doctors and dental surgeons to come down to the hospital and assist. If I had no friends in the medical profession to give him emergency treatment, my husband would have had a serious infection that would require major surgeries. It was a Sunday and the hospitals looked like they too were on holiday. The whole system needs to be revamped and fully staffed and equipped. Nobody wants to pay taxes or private healthcare insurance for a useless system. Hospital staff work very hard but they are not at liberty to break hospital protocols or the procedures even if those procedures are the very reason the system is crippled, so the Ministry of Health must look into it and change the procedures.”