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Sheenece’s parents hope to meet with Deyalsingh today
Parents of 18-month-old Sheenece Jackson, who needs an urgent liver transplant, will be heading to the Ministry of Health today to seek an audience with Minister Terrence Deyalsingh.
“We are racing against time right now. Everyday her condition is deteriorating,” lamented mother Lystra Jackson.
Jackson and her husband Sheldon will be taking with them all Sheenece’s documents, including the letter from Dr Carlos Luque of the ETHE Foundation in Argentina stating that he is willing to accept the ABO incompatible donor, to present to the minister.
An ABO incompatible donor does not match the same blood type as the patient. Sheenece was diagnosed with cirrhosis of the liver at birth.
“We are going ask the minister to intervene and have the ETHE Foundation reinstated as a medical institution used by the Children’s Life Fund Authority (CLFA),” said Jackson.
She said in November 2017 they dropped in Sheenece’s medical documents, minus the donor documents which was dropped off this year July and had been in constant contact with the authority which was aware that they were liaising with Luque.
However, the parents were informed in August that the authority had suspended its business with the foundation.
In an email response, CEO of the authority Selma Valentine-Ramdin said given the Jacksons difficulties in finding a donor, the clinic had opted to go with an ABO incompatible donor just prior to the July application.
She explained, “Given that a donor was identified, an application was made to the CLFA in July 2018. Assessment of centres then begins for the best care plan to be established, based on the medical reports and tests submitted. It should be noted here that the process and advice given to the clinic is independent of the process that takes place at the CLFA, one of the reasons is mitigation of bias.”
Valentine-Ramdin noted that it is challenging to find transplant centres that are under the CLFA $1million funding ceiling as the price in many centres in North America and England start at TT$2 million.
In Sheenece’s case, she said, centres now have to be examined based on their experience with ABO incompatibility donor “as post transplant management in this scenario is specific and absolutely critical.”
With regards to the Foundation ETHE, she said, “As far as we are aware, the hospital that Fundacion (foundation) ETHE takes our children to, does not have any experience with liver transplants having ABO incompatible donor. Thus, as indicated before, we are trying to find a centre which has experienced good outcomes to assist in managing these risks.”
She said all the cases sent to that institution thus far were with compatible donors. On whether CLFA is no longer doing business with the foundation, she said, “There are some concerns that we have raised with them, and are currently awaiting a response from that institution.”
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