Saviour Sibling Program (SSP)

Couples with autosomal dominant or recessive disorders have a significant chance of conceiving a pregnancy with serious genetic consequences. Beta Thalassaemia is one disorder that is endemic in Malaysia and Southeast Asia.

In general, Thalassaemia constitutes a public health problem in Malaysia. It is estimated that annually 350 babies are born in this country with blood transfusion dependent Thalassaemia major. This number will cumulatively increase each year, posing enormous social and economic hardships not only to patients and families but also to the government in ensuring optimal care for the existing population of Thalassaemia major.

Most Thalassaemia major patients succumb to a pain-staking lifelong journey consisting of countless trips to the hospital. Regular blood transfusion, transfusion transmitted illnesses, iron overload, general debility and ill-health mar a Thalassaemia patient’s quality of life.

Haematopoietic Stem Cell Transplantation (HSCT) from a healthy HLA-compatible bone marrow donor or cord blood, preferably from a sibling, may be the best treatment option or the only potential cure for patients with beta-thalassaemia to restore normal blood cell formation (haematopoiesis). Many patients are unable to receive this treatment option due to the challenges in finding an HLA-matching donor within the immediate and extended family. Thus, patients without the option of sibling donors and those without donors may benefit from our Saviour Sibling Program (SSP).

Saviour Siblings are children who are born through in-vitro fertilisation whose tissue (HSC from the cord blood) will be donated so that a brother or sister will be saved from a life-threatening genetic disorder.

Moving beyond routine preimplantation genetic testing for aneuploidy (PGT-A) and preimplantation genetic testing for mutations (PGT-M), Alpha IVF now offers pre-implantation genetic testing for HLA (PGT-HLA), to help parents conceive a child who is a tissue (HLA) match with their older sibling. During the birth of the saviour sibling, the umbilical cord blood which is rich in stem cells (otherwise considered a waste material) is harvested and infused to the moribund child to restore normal blood cell formation.

Alpha IVF & Women’s Specialist is the first and only IVF centre in Malaysia that offers NGS-based high-resolution HLA genotyping on embryonic biopsies to select embryos that are chromosomally healthy (PGT-A), disease-free (PGT-M) and HLA matching (PGT-HLA) for the sick sibling. All three genetic tests are done on a single biopsy sample.

Below are the steps to take if you’re interested in the Sibling Saviour Program:

PROCESS

SSP registration for interested couples

  • Alpha IVF & Women’s Specialist will convene to its ethics committee to consider the scope of a saviour sibling on a case-by-case basis to evaluate any serious life-threatening condition in the moribund child with a view where ‘saving’ involves the use of the bone-marrow, stem cells or cord blood stem cells from the resulting child as a sole mode of treatment. (Alpha IVF & Women’s Specialist will not enroll cases where ‘saving’ involves the donation of onerous organs such as the kidney, part of the liver or intestine and so on).
  • Genetic testing for the couple and the sick child will be conducted to:
    • Establish the genetic abnormality in the family
    • Determine the HLA genotyping by Next Generation Sequencing (NGS)
  • Counsel and enrol the couple into the IVF cycle(s)
  • An embryo is derived via IVF or ICSI
  • Preimplantation genetic testing is conducted on the biopsied embryo. The embryo is tested for:
    • PGT-A (For chromosomal health)
    • PGT-M (For embryos that are free from diseases)
    • PGT-HLA (For high resolution HLA typing)
  • A healthy embryo is selected and implanted via IVF
  • The healthy sibling saviour is born
  • Stem cells from the cord blood are harvested immediately after the birth of the saviour sibling
  • The harvested stem cells are transplanted to the patient
  • Patient is disease-free