Usually whenever Sankalp receives blood requests on the helpline, the request gets fulfilled within a week unless operation is scheduled for a later date. But in this one request, the heart surgery of a 9 year old girl was postponed 3 times in 6 months due to various reasons.
Jyoti(name changed) is a 9 year old girl from a small town near Hyderabad. She was diagnosed for Ventricular septal defect (hole in the heart) when she was 5 years old due to which a heart surgery was required. Jyoti's parents were laborers and could not afford for the operation. Jyoti's uncle took up the complete responsibility and approached state Chief Minister funds for the child’s treatment. After an years struggle, he was successful in getting the funds sanctioned for his niece. But he did not know that money was not the only thing which was hard to arrange.
Jyoti's blood group was Bombay Oh negative, which is a rare blood group found 1 in 75000 people. And this blood group being very similar to Oh group, very few are aware that their blood group belongs to Bombay Oh type.
Compulsion to Operate only within AP
One more complication in this request was that the family did not have the option to travel out of AP as the funds were available only if the surgery was done within the state. The option of making use of intra-operative cell salvage died out as the hospitals which were to treat the child were not adequately exposed to this procedure. This procedure would have allowed the collection of the blood which flows during surgery, cleaning it up and re-transfusing it to patient. This reduces the number of units of blood that are required for blood intensive surgeries like this one.
The treating hospital asked the patient side to arrange for 4 Bombay negative units for the surgery. The child’s uncle was now on the lookout for these 4 special units. After enquiring about the unit for more than an year, he was able to contact one genuine Bombay negative donor in Bangalore. But unfortunately, her hemoglobin had always been less making her ineligible to donate. But she immediately passed on the patient contact details to Sankalp blood helpline.
After discussing the case with the patient side and doctor, Sankalp volunteers started speaking to the donors and were able to arrange for 3 Bombay negative donors across Karnataka and Tamil Nadu. But soon the volunteer in charge realized that donor is not the only problem but there were a lot of other things that had to be taken care in this case.
Mandatory Cross-match Even Before Scheduling Surgery
Firstly, the surgeon was not ready to perform the operation unless and until he had the successful cross match report of all donors. Even though the donors blood group was confirmed as Bombay Blood group from pronounced blood banks of the state, cross match report was demanded by the doctors. Organising for the cross matches even before the surgery date was out with donors in various different places was not only undue trouble for the donors, but it was also time taking and troublesome for the patient’s uncle. This process in itself delayed the surgery by a month.
Donors to be Brought to the Hospital and donate 'Freshly'
Secondly, the donors had to donate the blood on the day of the operation at the hospital where the surgery was to be performed. This made the date of surgery dependent on all the 3 donors availability to travel to Hyderabad and spend at least a day there.
Last Minute Change In Requirement
Thirdly, Sankalp volunteer had requested the surgeon in charge to proceed with the operation with 3 units as 4th unit may be required only as a back up and had assured him that if there was a requirement for the 4th unit, the unit will be donated in Bangalore and airlifted within hours. But the day before the operation, the person in-charge of the hospital rejected to proceed with the operation until the 4 donors was at the hospital, even though all 3 donors were ready to leave to Hyderabad that night. Again, the operation had to be postponed by 2 weeks, by when the fourth person was to be arranged.
Finally the 4th donor was contacted from Maharashtra and the operation was successfully completed on 7th June and the child is doing perfectly fine.
The operation was successful but in order to see this day, the patients family had to spend around 4 years only hoping to see this day as soon as possible. This surgery could have been done at an early stage and also in a more smoother way.
Things Could Have Been Done A Better Way
This request would have been managed without many issues if only the doctors were willing to understand the situation. Putting donors and the family to the amount of discomfort and problem that they were actually put thought was completely unnecessary. We appeal to the medical community to:
- Kindly accept the blood unit which is drawn from other standard blood banks across the country. Though medically it is a well accepted fact that there is nothing like fresh blood, medical practitioners across the country keep insisting on blood donors to wait outside the wards before they start the procedure. People have been giving into this unscientific and painful demand all across the country. However, when the blood group is so rare, what should be understood is that it is really difficult to for the donors to travel to various place. It would be really helpful if the donor donates at his/ her hometown and this unit can be well packaged and airlifted and delivered to the patient within 24 hours. The hospital may perform the required testing before the unit is transfused to the patient.
- If there is a requirement of a Bombay Oh Positive/Negative unit, please contact Sankalp helpline 9480044444. This enable the use of units of blood which are available off the shelf across the country before we start looking for donors.
- If any unit is unutilized for the surgery, please inform about the unit on the helpline so that we can make best use of the unit.
- Consider the blood group certificate given to a donor as genuine and avoid compulsory requirement of cross match report of every donor when there is shortage of time.
This way we can ensure that extremely rare blood group requests can be best managed and reduces the panic level among patient relatives to arrange for the unit.
Note of Thanks
Sankalp thanks Mr Hanmanth Khandu Waghmare, Mr Mehaboob Pasha, Mr Pradeep and Mr Jayakanthan to have spent their precious time in order to save the little girl’s life. Also, we thank Mr. Vijay who trusted us in an emergency situation and helped us transport a unit from Bangalore to Hyderabad.