Karachi: 8-yr-old Thalassaemia patient with rare blood type looking for donors

KARACHI: Afifa, 8, suffers from an inherited form of anemia caused by faulty synthesis of hemoglobin, which calls for frequent transfusion of fresh blood so that the patient could survive.

Thalassaemia is not at all a rare medical condition, but unfortunately, the type of Afifa’s blood certainly is.

This mum-dad’s little princess, who only wants to live a healthy life, was diagnosed with this genetic blood disorder five years back when she was just three. The news had blown the loving parents away, but the worst was yet to come.

“It came as a blow that benumbed us for a while, but then we made up our mind to do whatever we can to keep out child alive and healthy. We knew it’s a lifelong struggle, but we were resolved”, said her father, Wajahat Ayaz.

A tearful Ayaz said when Afifa’s blood type report arrived it got the better of us.

FACT CHECK: H/h, also known as Oh or the Bombay Blood Group, is a rare blood type. This blood phenotype was first discovered in Bombay, now known as Mumbai, in India, by Dr. Y. M. Bhende in 1952.

“We were told that hers is a blood group so rare that its donors could be counted on the fingers of one hand. At first we just broke down, but the next moment collected all the shards of our shattered world to make sure we grew old watching our child grow up, come what may”, Ayaz said further.

FACT CHECK: This very rare phenotype is generally present in about 0.0004% (about 4 per million) of the human population, though in some places such as Mumbai (formerly Bombay) locals can have occurrences in as much as 0.01% (1 in 10,000) of inhabitants and 1 in a million people in Europe. Given that this condition is very rare, any person with this blood group who needs an urgent blood transfusion will probably be unable to get it, as no blood bank would have any in stock.

Ayaz said it is very difficult for anyone to see their child fighting an illness as serious as Thalassaemia, but the power of parenthood saw us through.

According to media reports there were only seven people in Karachi who had this blood type.

"Reaching out to them was no easy. I ran from pillar to post to get to them", said he.

FACT CHECK: There are only 14 people in Pakistan who have this blood group.

Afifa's was the first case of a Thalassaemia patient with Bombay Blood Group reported in Karachi –we cannot say for sure about more cases.

"The problem with the Bombay Blood Group is that it could not be transfused, even with the O + blood group, which is the universal donor. Blood from a Bombay Blood Group individual only should be transfused to a Bombay Blood Group patient", he added.

"There are only a few people with the particular blood type in Karachi, and if transfused with any other blood group, the blood cells start to break and results in a severe immune reaction," he said.

Thalassaemia can prove fatal if enough donors are not available to support the consistent supply of blood to the patient.

He appealed to citizens at large with Bombay Blood Group to step forward to help Afifa lead a healthy life.

"No amount of money can buy even an ounce of Bombay Blood Group, all we need are healthy donors, who we need as urgently as ever as Afifa's blood transfusion is 45 days overdue", said he.

Ayaz further added that there were only two registered donors in the country when his daughter was diagnosed with Thalassaemia in 2008. Fortunately last year, he found another. According to Ayaz three of the Bombay Blood donors fly to Pakistan from the US and Dubai every year to donate.

A health expert said Afifa should undergo a bone marrow transplant before long as her mother could donate it to her, but also warned that the procedure was too risky as Afifa was the only child of her parents.

"The bone-marrow match could be tricky, if it is not 100 percent than the transplant may not help he much", said he.

The average cost of a bone-marrow transplant is around Rs4 million.

Afifa, may you live long, get all the love you deserve, smile all the time, and make the most of this life. We are with you. Aren't we?

What to do if you have a rare blood type?

According to Sanklap India Foundation this is what one should do if he needs Bombay Blood Group? He can definitely start a search for Bombay Blood Group by following these steps.

a) Get all the family members and relatives of the patients tested for the blood group. It’s very likely that one or the other relative has this group.
b) Put up a request for the requirement in the leading newspapers. Please don’t circulate messages and mails as they may end up in the spam folder.
c) Be open to get blood from other cities.
d) The most effective way is visiting all blood banks of the city as well as neighbouring big cities. Usually blood banks have a huge list of donors who had donated in the blood bank till date. Out of this huge list 1 or 2 may be having Bombay blood group.

It can be avoided

For the autosomal recessive forms of the disease, both parents must be carriers in order for a child to be affected. If both parents carry a hemoglobinopathy trait, there is a 25 percent risk with each pregnancy for an affected child. Genetic counseling and genetic testing is recommended for families that carry a Thalassemia trait.

Rare Blood Rare Problems

Ayaz also highlighted the problems facing the people with rare blood groups in the country, saying there was no authority that kept a record of people with rare blood groups.

"I'll urge people to get their blood groups tested and also urge NADRA to make it mandatory that blood group of every CNIC holder is written on his or her identity card."

Rare Blood Group Registry

According to hematologists, there is an urgent need for a rare blood group registry in the country where people with rare blood groups were registered.

"In emergencies, it is learnt that some people have rare blood groups and when hospital staff and patient’s attendants start looking for the blood, they face immense problems in finding the donor," a hematologist said.

He maintained that even some common blood groups like the AB (Negative), O (Negative) and RhD (Negative) were very rare in the country where many people didn’t get their blood groups tested.

Citing some data on the blood groups, he said as per some estimates, some 35 percent Pakistanis had O (Negative) blood group while AB (Negative) blood group holders were only eight percent of the total population.

He said that knowing blood group was also important as even during pregnancies, sometimes conflict in blood groups of the parents and the child could result in stillbirths or even become a threat to the mother’s life.

Dividends of Donating Blood

If a person donates blood to any reputable blood bank, they would not only be apprised of their blood group but the blood banks would also screen their blood for HIV/AIDS and some other diseases free of cost.

Moreover, there are thousands of children who need blood transfusion after every 25 days, and their transfusion needs are only fulfilled by reputable blood banks.