Thalassemias are a heterogeneous group of genetically transmitted disorders characterized by anaemia, jaundice, and increased size of liver and spleen. Anaemia, the hallmark symptom is due to premature destruction of red blood cells in the bone marrow for the defective haemoglobin they synthesize and possess, a direct impact of the faulty genes. 

Symptoms of Thalassemia

While some will show signs of thalassemia at birth, others may only develop them after two years or even later. Some signs may appear well into their childhood or adolescence. It’s possible that the symptoms of thalassemia are not even noticed because they aren’t always visible. However, some common signs include:

• Bone deformities, mainly in the face
• Dark urine
• A delay in growth and development
• Extreme fatigue and dizziness
• Pain in the chest
• Rapid heartbeat and shortness of breath
• Yellow or pale skin

Treating Thalassemia

Severely affected ones are called Major and require a frequent and regular blood transfusion to survive along with regular and adequate excess iron chelation therapy. If these therapies are instituted sufficiently early and followed regularly with proper monitoring, they mature to adulthood, leading socially and economically productive lives. 

Unfortunately, there’s no easy cure. 

The disorder can be prevented if partners do get tested for Thalassaemia carrier status, and if both are carrying one defective gene, they either should not get married or prefer to undertake pre-natal diagnostic procedures, to determine the status of the unborn and then take an informed decision. 

Cure till date is only possible via haematopoietic stem cell transplantation. Umbilical cord blood derived haematopoietic stem cells have emerged as able and successful alternatives to bone marrow and peripheral blood derived haematopoietic stem cells transplantation. It’s possibly the best option for couples who are with a single child suffering from Thalassaemia.

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Umbilical cord blood plays a potent role in treating life-threatening ailments like sickle cell anaemia, lymphoma, leukaemia and the like. Today, over 25,000 patients round the globe have had cord blood transplants since their parents had a long-term vision that made them donate the child’s umbilical cord blood to a prominent cord blood bank.

In fact, most ace doctors and health experts suggest that cord blood must be preserved until there’s need of it. Medical science presently believes that cord blood can be preserved for an indefinite time, so that it can be of use for several generations. Stem cell transplants having 40 years as the average age, the longer the cord tissue and cord blood is stored, the maximum will be its use. And this where the accreditation process ties in!

Who Manages the Cord Blood Banking Facilities?

Simply put, the cord blood banks get regulated by the United States Food and Drug Administration (FDA). It is essential for all cord blood banks to register their name with the FDA and welcome the recurrent inspections and adhere to the regulations listed by this body. Furthermore, there are several other cord blood banks, comprising of the Core 23 BioBank, that willingly place themselves for other additional regulation under reputed accrediting bodies such as FACT and AABB.

Recently, AABB accreditation is considered to be the standard or key to cord blood transplant globally, where about 70% of the AABB accredited cord blood banks are located outside of U.S. As an authorized and authentic accrediting organization for cellular therapies and transfusion medicine round the word, the AABB gives a patient ear to the stories from various members of blood banks, hospitals and other bodies. Listening, it is said is a vital aspect of AABB’s accreditation process and programme.

As a group of AABB assessor approach an organization, basic checklists aren’t what they depend on! On the other hand, their key responsibility is to enquire, observe, gather data, build connections and provide a direct feedback on the organization’s accomplishments in catering to AABB’s technical and quality management par. Other than the formal reviewing process, there’s a peer-to-peer knowledge sharing process that takes place along with other discussions related to the best practices. Furthermore, it is interesting to note that the accreditation programme of AABB is accredited by International Society for Quality in Healthcare, a notable global organization that oversees and accredits accrediting bodies.

In fact, back in 2016 it a Dubai based AABB accredited cord blood bank successfully delivered a life-saving treatment of a 7-year-old boy, by providing stem cells that has been obtained from the umbilical cord blood that was saved 3 years before the birth of his sibling. This 7-year-old boy, who’s the elder brother, was diagnosed with major beta thalassemia, which is a blood disorder that might require daily blood transfusions and in a lifetime, can branch out into other various serious health hazards and ailments.

There are several reasons why AABB accreditation is considered the best practice for cord blood transplant. This accreditation programme makes use of a risk-solving approach that needs a meticulous evaluation by an AABB assessor to be on-site, examining the facility’s policies, processes and procedure to discover any possible marks of non-conformity. At the time of this accreditation process, the institutions gain from customized help rendered by a technical specialist at the AABB’s accreditation department. It is this specialist who in turn guides and assists the institutions and its team members on the accreditation process, giving answers to required queries and authenticating procedure followed and documents maintained. The verification process is strict, so that cord blood transplant taking place from the cord blood bank poses no health hazards and other discomforts.

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The Kumar family from India found out that their 18-month-old daughter was suffering from Thalassemia, a serious genetically inherited blood disorder that severely hinders the body’s capability to generate hemoglobin. Due to this lack of hemoglobin in the body, adequate oxygen and nutrients do not reach the body’s tissues ultimately resulting in anemia. The typical course of therapy available to Thamirabharuni Kumar was monthly blood transfusions for the rest of her life.

This would at least supply her body with healthy amounts of hemoglobin. The doctor overseeing Thamirabharuni’s treatment suggested to her parents to consider the option of having a second child. With more and more scientific evidence pointing towards the greater success of umbilical cord blood transplants in the case of thalassemia patients, it was worth giving a shot. Sibling’s umbilical cord blood stem cells have a 75% chance of being the perfect donor match which is critical in executing the transplant. Without a perfect donor match especially in stem cell therapies, it may reduce the risk of rejection or graft-versus-host disease.

Post five months after conception, doctors performed extensive in-utero testing on the fetus in order to determine that the baby in the womb had not inherited thalassemia too. Another series of testing ensued that finally allowed the team of doctors to ascertain that the sibling was a perfect donor match for his sister.

The transplant was performed at Apollo Speciality Hospital in Chennai by a team of doctors. Whilst the transplant was a success, Thamirabharuni would have to take immune-suppressing drugs for one year. There existed a possibility that she would be vulnerable to infections due to this. Additionally, there also was the probability of her developing graft versus host disease, although having a perfect match from a sibling reduces this risk significantly. Over time, the risks of rejection and of graft versus host disease will decrease.

When asked about her experience, Thamirabharuni said, “When they used the needles for blood transfusion it would hurt and sometimes they would never get the vein but still I had to go for blood transfusion every month.” She added, “My brother’s cord blood saved me or I knew I wouldn’t have been alive for long. I love my brother.”

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