Mum Afia Begum has spoken of her son’s lifesaving heart transplant and in now urging others in the community not to shy away from talking about organ donation.

Although many black and Asian patients are able to receive a transplant from a white donor, for many the best match will come from a donor from the same ethnic background. 

However only 33% of Asian people have told their family they want to be an organ donor compared with almost half (49%) of all adults in England, an NHS Blood and Transplant Survey has found. 

Blood and tissue types need to match for a successful transplant and organs from people from the same ethnic background are more likely to be a close match.

Afria said: “Before this happened, organ donation was a difficult subject for me – to me it was about death and I didn’t want to think about death.

“I can now think about it and talk about it because I have seen it is about life and it saved my son’s life.

“We need more people, especially Asian people, to support organ donation.

“I know some people think it’s against their religion but all the major religions support the principles of organ donation.

“I would urge everyone to join the NHS Organ Donor Register and talk to your family.”

Afia’s son, Hasnath Siddiquey, aged 6, had a lifesaving transplant after suffering heart failure aged just three, which doctors believe was the result of a viral infection.

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Hasnath, from Darlington, became ill in December 2014, with vomiting, a cough and constipation. 

Afia took him for tests and doctors at first thought it was a routine infection.

However his condition deteriorated rapidly and he was admitted to hospital.

He face swelled up, he stopped passing urine, and he began grunting with each breath - an x-ray revealed he had an enlarged heart.

“I had no idea it was something as serious at that,” said Afia, a mum of three.

Further tests revealed Hasnath had dilated cardiomyopathy.
The muscle on the left side of his heart had become weak and stretched.

Afia said: “They never found out exactly what caused it but they think it must have been the virus.”

Hasnath’s health continued to go downhill and he was put into intensive care.

Then, just eight days after his mum first took him to the GP, he had an emergency operation to fit a Left Ventricular Assist Device, a type of heart pump that can slow the decline and keep people alive until they can receive a transplant.

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“I thought the doctors were going to tell me this was the end,” said Afia. “Then they showed me the pump.

“The operation went very well. When he recovered he was stable and well – he was running around doing all the normal things that boys do though he have issues with his appetite and tiredness.
“You would never know there was anything wrong except for the battery pack for the LVAD.”

Hasnath received his heart transplant in July 2015, after going into theatre around 1.30am in the morning.

“I saw him the following day round about lunch time and he looked amazingly well already.”

Afia is incredibly grateful to the donor and their family and she has struggled to come to terms with her emotions around the transplant.

She said: “I felt like another person lost their child in order my child to live.

“I just couldn’t bear the thought of another family losing their loved one. 

“I just didn’t want anyone else to have gone through what I almost went through.

“I spoke to a counsellor who said it was two separate things – this person had died for whatever reason and nothing could be done, and donation took place after that.

“It’s just so amazing that the donor’s family were willing to do this.”

Hasnath is now fit and well and full of energy – Afia said he is a ‘chatterbox’ who loves gadgets and asking questions.

The family has just marked the very emotional anniversary of the transplant, which was around the time of Hasnath’s birthday.


Anthony Clarkson, Assistant Director of Organ Donation for NHS Blood and Transplant, said: “Because people from the same ethnic background are more likely to be a match, more Asian lives would be saved if more Asian people donated. 
 
“We know that Asian families are less likely to discuss organ donation and are much more likely to decline to donate organs for lifesaving transplants.

“Last year 470 people died while waiting for a transplant or within one year of removal, and of these, 50 people were Asian.

"If more Asian people decided to be donors and shared their decision with their families more lives would be saved.
 
“This Organ Donation Week, please tell your family you want to save lives. A few words now can make an extraordinary difference. 
 
“If you want to be a donor, your family’s support is still needed for donation to go ahead, even if you are on the NHS Organ Donor Register.
 
“If you are unsure about donation, please ask yourselves as a family: what would you do if one of you needed a transplant? Would you accept a lifesaving organ? If you’d take an organ, shouldn’t you be prepared to donate?”

To support Organ Donation Week click here