Status of Congenital Heart Disease in Bangladesh – 2018

A Status Report

By: Prof Dr. Nurun Nahar Fatema Structural and interventional Cardiologist , Head Of Pediatric cardiology CMH Dhaka

Introduction and Background in Bangladesh Perspective

  • Paediatric cardiac care in Bangladesh is still in its early infancy.
  • There is no nationwide data available so far on congenital heart disease prevalence at birth or on its contribution to infant mortality rate or on proportional mortality from CHD.
  • There are no specialized Paediatric cardiac training programs.
  • One or two which are existing are often imparted through combined adult and Paediatric programs.

The existing number of trained personnel in pediatric cardiology and pediatric cardiac surgery is scanty. There is no national policy yet for pediatric heart care.

Heart disease has not given any importance in IMCI (Integrated Management of Children Illness).

  • Situation is improving gradually since 1998.
    Awareness among paediatricians are increasing through
    – CME’s.
    – Seminars.
    – Symposium.

Training program exclusively dedicated to pediatric cardiology and cardiac surgery is coming up.

  • Incidence: 8-10/1000 worldwide.
  • One third of these patients require intervention in the first year of life.
  • 75% of them can survive beyond the 1st year of life if properly treated and can lead nearly normal life thereafter.

Prevalence in Bangladesh

In Armed Forces
Prevalence is 25/1000 live birth.
In other places 8-10/1000 live birth.

Profile of CHD in Bangladesh

In neonates Atrial septal defect is more common. In older children VSD is in the top of the list. In neonates complex disease like TGA, pulmonary atresia etc. are common. VSD, ASD, PDA are common in older children.

Background – Perspective CMH Dhaka

Pediatric cardiology dept of CMH Dhaka started its function since 19th Sept 1998  as first ever in Bangladesh with the help of disposables and interventional items presented to  paed cardiologist by PSCC, KSA authority after completion of training of a paed cardiac team from 1996 t0 1998.

Facilities for Patients in Ped card Unit (world class standard maintained)

  1. Diagnosis of all kind of CHD and formulation of management plan till cure.
  2. The intervention of ASD, VSD, PDA, PDA stenting, Balloon valvoplasty and angioplasty, BAS (Rashkind), Life-saving intervention in newborn and children and in some adult cases with untreated CHD
  3. Sending the patient to India or other countries if treatment is not available in Bangladesh.
  4. Arrange treatment from abroad for the patient by networking.
  5. Fetal echocardiography of pregnant mother for prenatal diagnosis of CHD.
  6. Follow up service for all postoperative and post interventional patient.
  7. Appointment system over telephone for outstation patient.

General information about paediatric cardiology department

  1. It is the first unit of its kind in Bangladesh.
  2. Trans-catheter cardiac interventions on various complex and simple heart disease is available only in this centre of Bangladesh.
  3. Various patients who neeneedans catheter interventions are referred to peda iatric cardiologist for help from many centers through proper channel.
  4. It is the first unit of its kind in Bangladesh.
  5. Trans-catheter cardiac interventions on various complex and simple heart disease is available only in this centre of Bangladesh.
  6. Various patients who needs trans catheter interventions are referred to pediatric cardiologist for help from many centers through proper channel.
  • As this treatment is not available with other center, people have to travel abroad and spend foreign currency to get treatment.
  • civilian non-entitled patient is eligible to get this treatment in CMH Dhaka after permission from the authority. This treatment is given as outpatient basis with 24 hrs observation in CMH.
Awareness created in CMH Dhaka , peripheral CMH’s, all medical college hospitals by CME programs, seminars, symposiums etc.

About 100 scientific papers were presented so far in various places after taking security clearance.

About 80 publications were published in newspapers, senabarta, army journal, medical journals on various work of the department.

All new innovations were incorporated once available with the help of the inventor organization and with full financial support from them.

New technologies were learned also by visiting centers where these are available.

Formal training programs for pediatric cardiologist should be started immediately. (FCPS and MD paed cardiology started.)

  • So far 08 technology transfer program was conducted on various interventional procedures.
  • Other centers are following our model now, but a single visit technology transfer was possible in our center only.

  • With in very short time of commencement of pediatric cardiology department, concerned surgeons, cardiologist of our country started seeking help from the department.
  • Legendary cardiac surgeon Prof S R Khan used to come regularly to seek help for their patients, to see Echo and cath films directly.


In 
2008 Dr. Devy Shetty of Narayana Hridalaya agreed to train doctors & nurses from BD army who will provide pediatric cardiac care in CMH team.

  • Since then 8 doctors & 12 nurses were trained from army through proper channel.
  • Though interventional treatment modality reached a level with a single program on each variety congenital surgery program still remains almost in a preliminary stage.
  • We send 25- 35 patients per year to India from military for open heart surgery.
  • From civil sector average 02 patient are referred per day to India.

Milestone Achieved in paediatric cardiology unit CMH Dhaka (Ventures)

  • First ever Pulmonary valve replacement in south Asia with melody valve. 25.12.2012
  • First ever Balloon Atrial Septostomy 1998 (Case report published).
  • First ever PDA Coil Occlusion, 2000 (Case report published).
  • First ever Pulmonary Valvoplasty in an infant 1999 (Case report published).
  • First ever ASD Device Closure, 2001 (Case report published).
  • First ever VSD Device Closure, 2004 (Case report published).
  • First ever PDA Device Closure, 2003 (Case report published).
  • First ever PM VSD Closure, 2006 (Case report published).
  • First ever Coronary Fistula Closure, 2010 (Case report published).
  • First ever PDA Stenting, 2006 (Case report published).
  • First ever VSD Coil Occlusion, 2007 (Case report published).
  • First ever CoA Balloon in newborn, 2001 (Case report published).

Academic achievement

Training from abroad

  1. Five Paediatric Cardiologist is working in the dept of Paediatric Cardiology. All of them have been trained from abroad.
  2. Officers are picked up on the basis of their aptitude and course are managed with personal effort.
  3. Different level of officers is selected to cover any gap.

Research activities

Life-saving treatment of newborn in Paediatric Cardiology Unit (2017)

The workload of Pediatric Cardiology Unit CMH Dhaka ( 2000—2017 )

Cath lab Statistics up to 2017

Diagnostic catheterization 5024
Various interventions 4036

The estimated cost of a workload in Pediatric Cardiology Unit—2017 (price according to civil hospital standard)

Statistics of various types of interventions up to 2017

Paediatric Cardiac ICU

Total be        07
a.  Officer       02
b.  Neonate   02
c.   Others      04

ALL  WITH CENTRAL OXYGEN, SUCTION AND VENTILATION FACILITY.

Aerial view of CMH

The beginning of Charity Programme/ Bangladesh perspective

In view of present status of cardiac surgery and accumulation/death of poor patients few ideas were conceived :

  • Formation of zakat fund by the doctors who work in the field of cardiac care (CHTB)
  • Call for support from international charity organization on CHD.
  • Little heart charity program accepted the call to help poor children of Bangladesh in 2013.

We have requested all cardiac hospitals of Dhaka to support charity program.

  • Maj Gen Abul Kalam Azad (Retd), Ex DGMS, BD armed forces and Maj Gen Md Rabiul Hossain (Retd), Ex DGMS, BD Armed forces ( the than consultant physician general) accepted the challenge and that’s how we entered into a new era of charity mission where we are giving service to the underprivileged group of children with CHD.
  • Little heart Charity Programme, KSA & Muntada Aid, UK has taken a giant step to help these underprivileged group of children.

“ Every heart deserves to beat ”

Our Little Hearts project provides free life-saving cardiac surgery and interventional cardiac catheterization for children with Congenital Heart Defects from underprivileged families irrespective of gender, race or religion.

Each year over 1,000,000 babies is born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood

Muntada Aid believes ignoring this deadly killer is tantamount to a death sentence on the many babies afflicted with this disease. Which is why the Little Hearts project exists. The Little Hearts project is the largest heart treatment project of its kind in the world, sending a team of more than 30 heart professionals each time carrying out on average 60 operations.

 

Available treatment facilities: Newborn (Achievement)

Many Newborn of our country is dying from CHD before reaching pediatric cardiologist/ Surgeons. Even if they are reaching to a center, they are not getting interventions /surgeries in time as they are available in one or two places or not available at all. CMH Dhaka is the only place since 1998 where neonatal life-saving interventions are available.

NEONATAL LIFESAVING INTERVENTIONS

BALLOON ATRIAL SEPTOSTOMY

PDA STENTING

CRITICAL STENOTIC LESIONS  VALVOPLASTY AND ANGIOPLASTY.

 

The beginning of Charity Programme/ Bangladesh perspective

In view of the present status of cardiac surgery and accumulation/death of poor patients few ideas were conceived :

Formation of zakat fund by the doctors who work in the field of cardiac care (CHTB)

Call for support from international charity organization on CHD.

Little heart charity program accepted the call to help poor children of Bangladesh in 2013.

Little heart Charity Programme, KSA & Muntada Aid, UK has taken a giant step to help these underprivileged group of children.

Qatar Red Crescent charity for CHD

“ Every heart deserves to beat ”

Our Little Hearts project provides free life-saving cardiac surgery and interventional cardiac catheterization for children with Congenital Heart Defects from underprivileged families irrespective of gender, race or religion.

Each year over 1,000,000 babies is born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood

Muntada Aid believes ignoring this deadly killer is tantamount to a death sentence on the many babies afflicted with this disease. Which is why the Little Hearts project exists. The Little Hearts project is the largest heart treatment project of its kind in the world, sending a team of more than 30 heart professionals each time carrying out on average 60 operations.

First Charity mission

27 Oct to 01 Nov 2014

Second Charity mission

28 Feb to 06 Mar 2015

Third Charity mission

Dec 12 to 19 Dec 2015

Fourth Charity mission

16 Feb to  25 Feb 2018

Al Muntada Aid Parmanent  Charity mission

Since May 2016

Wadud-Moimunnessa Charity mission Since 14 April 2013

Standing in the hospital corridors with other parents too anxious for news of their children to sleep or sit down, Abdul Rajjak’s face crumples with relief when he finds out his son has survived life-saving but high-risk open heart surgery.

Rajjak tells a story all too familiar in Bangladesh, where congenital heart disease is common. Even in the capital, Dhaka, there is a shortage of doctors for paediatric surgical cases.

He and his wife, Shelina, discovered that their baby had a hole in his heart, but had to live with the guilt of their inability to afford the $2,500 (£1,689) surgery required and the anxiety of seeing him struggle to breathe, feed and play.

“This baby is so precious to us, he’s so valuable,” Rajjak says of two-year-old Siam.

The couple spent eight years trying for a baby and exhausted all their savings on fertility treatment. When his son was finally born, Rajjak said it was “like holding the moon”.

But Siam was often in hospital and it became difficult for Rajjak, who works in a Dhaka textile factory, to pay the resulting medical bills.

Doing overtime, which meant working 17 hours a day, earned him 8,400 taka (about £72) a month. Half was used to pay the rent on their one-room home. Rajjak had started taking out loans when he heard that a surgical team was coming from Saudi Arabia to do free operations.

Siam was one of 400 children brought from all over Bangladesh – a country with a population of 160 million – to Dhaka’s combined military hospital (CMH). He was among 250 children chosen for surgery, and survived the six weeks between selection and operation.

“Fifteen patients died when we were calling them, as they were very serious and they could not wait,” says Dr Nurun Fatema, who opened Bangladesh’s first paediatric cardiology unit in 1998.

Equipped with a “cath lab”, Fatema can do heart operations using a probe, balloons and stents passed up a catheter to widen valves and increase the flow of oxygenated blood.

She refers her private patients to the CMH, meant for military families, and operates on some patients for free through a local charity.

But in Bangladesh, where many poor mothers don’t receive scans, nor sufficient food and care during pregnancy, the need is too great for Fatema and the handful of other paediatric specialists to fulfill.

“We did a study in this hospital and we found 25 per 1,000 live births are suffering from congenital heart disease. It is about eight to 10 live births in advanced countries,” she says.

“Eighty percent of [the patients’ families] are below the poverty line. They can’t afford it by themselves and most of them die due to a lack of money and facilities.”

The surgery is so complex and the patients so fragile – months-old but newborn-sized babies and frail children – that few surgeons risk operating.

“It has to be a winning game, our business. We can’t be killing babies,” says Dr Jameel al-Ata, who has come from Saudi Arabia with 23 medics to operate on children as part of the British NGO Muntada Aid’s Little Hearts programme.

In Bangladesh, many poor parents post adverts appealing for money to send their babies for treatment in India. The only alternative is to watch them perish.

It takes a firm and steady grip on an electric saw that sounds like a drill to get through a child’s sternum, and some deft stitches to pin and stop a bouncing little heart. In the seconds that feel like minutes punctuated by quickening bleeps, a machine sprouting thick tubes of raspberry-red liquid takes over the heart’s job and whirls oxygenated blood to patients who barely fill a third of the bed.

Nurses swab and provide countless pairs of slim scissors to surgeons whose microscopic glasses help them to slice and solder the tiniest vessels. Anesthetists flinch when undulating lines etched out on monitors form sharp zigzags and adjust the rainbow of wires feeding little bodies.

Open-heart surgery on children weighing just a few kilograms or on babies only weeks old is so complicated that in Bangladesh, only a few surgeons can and will do it.

Congenital heart disease affects the poorest most. In Bangladesh, it costs around $2,000 to fix. In the absence of a miracle donation, many simply wither and die. “They need expensive treatment but they can’t afford it by themselves and most of them die due to a lack of money and facilities,” says Nurun Fatema, a cardiologist at Dhaka’s Combined Military Hospital (CMH). “Eighty percent of them are below the poverty line.“ Even at the sprawling CMH complex, which usually deals with salaried military staff and their families, studies showed that of 1,000 babies born, 25 had congenital heart disease. This rate is around three times that of western countries.

A shortage of paediatrician

Through a private clinic and charity initiative, Fatema performs some procedures using a less invasive method than open heart surgery, free of charge. Using a catheter running from the groin and large X-ray monitors, she can use a wire probe to get to the heart, inject dye to show where the blood is trapped or leaking, blow up balloons to open valves and stents to fix them. It is still a risky process and one that few paediatric specialists can do in a country the size of England and Wales but with a child population of 60 million. Mohammed Abdul Hannan, CMH’s cardiac surgeon, says that Bangladesh started doing heart operations in 1981, and that for the past 15 years the standard has gone up so that “adult cardiac surgery patients now need not go abroad”. “But for paediatric surgery, we are lacking experts,” for both surgical and intensive care, he says. There are so few paediatric specialists that parents issue desperate pleas to strangers for help.

“I saw one advertisement in the paper asking for help to collect money so that they can take their babies abroad for treatment. As this treatment is not available here,” Hannan says.

Little heart palpitations

Prodip and Shebaka Shil have come from the other end of Bangladesh to Dhaka with their nine-year-old daughter Fima to solve a problem that has haunted them since they found out that she had a hole in her heart at birth. “When she was in pain, we were in pain,” says Prodip, a barber from the poor town of Chittagong, 350km from Dhaka. He earns $70 a month and was told that it would cost $5,000 to mend Fima’s heart. “Tup-tup” is how Fima describes the heart palpitations that would shatter her if she tried to play and, more often than not, trap her at home or in hospital instead of at school. Malnutrition is a common side-effect of heart disease, and Fima wears the symptoms on her frail frame that belongs to a child half her age. Her thin limbs are covered in a soft downy hair normally seen on newborn babies or people with eating disorders who need extra insulation. Fima was one of about 250 children who were chosen for surgery before a visit by medics from the British charity Muntada Aid, which runs a “Little Hearts” project providing free surgery.

Little Hearts’ project 

Since 2013, Little Hearts has raised more than $2M for surgeries on children in  Bangladesh, Yemen, Sudan, Tanzania and Mauritania, where remedies for congenital heart disease are lacking or absent. Bangladesh has one centre “with a couple of surgeons doing complex paediatric cases, and that’s not enough to cover one city, let alone the entire country,” says Mohammad Shihata, a cardiac surgeon who usually does a few surgeries a week at a hospital in Jeddah, Saudi Arabia. In Dhaka, he is performing back-to-back surgeries from dawn till dusk, as time is ticking for many patients deemed too small and high-risk by local surgeons. “By waiting for the babies to grow up, natural selection will play its role and a lot of babies won’t make it on their own and will die,” he explains. Fifteen of the children selected for surgery two months before the arrival of the team of 23 medics did not survive. Many others are so weak that parents wail and cling to them until the last moment when surgical staff take them away. Fathers who appear stoic creep to doorways and windows to stare into the imaginary distance of a completely smog-shrouded city, then quickly wipe their eyes with a hand or sleeve.

Training auxiliary staff 

Fima’s parents are among those camping out in a courtyard metres from the surgical ward instead of their allocated hospital rooms. The surgery can take hours and parents cannot see their children until they have come to and had tubes removed. But relatives still huddle inches from the ward entrance as they await news or a glimpse of their children being stretchered to the intensive care ward. While heart surgery can be traumatic and dramatic to look at, the babies transferred to the ward resemble fleshy circuit boards, and it takes a well-trained intensive care team to keep them from crashing. Muntada Aid now leaves intensive-care nurses for an extra week to provide more training, after some patients died at the hands of local staff who were not properly prepared. “In one sense our babies are getting the treatment and getting cured but at the same time we are getting trained,” says Hannan, who adds that he is “confident” that he can do all of these surgeries if the auxiliary staff are also trained. Rawkon Are, an intensive care nurse at CMH, says many new skills are imparted, including “medication, infusion, patient management, dressing, everything”. She has 17 years of nursing under her belt, but says that on these charitable trips they see “a very quick improvement” in their skills from the “watch, see and then do” mantra of hands-on training.

Progress

In Bangladesh, the local staff have improved so much since the first visit in 2013 that this time the Muntada Aid team has managed to carry out a record 94 operations instead of 50. The charity has sent staff from developing countries for weeks or months-long training courses in Turkey, and plans to send people to Saudi Arabia for longer-term shadowing. “We’re hoping that it will get to a level that they say stop, we don’t need you any more,” says cardiac surgeon Mohammed Jamjoom, from Jeddah. Kabir Miah, a Muntada Aid spokesman who moved from Bangladesh to Britain as a child, says the charity’s aim is “ultimately, not to come here any more” as local staff take over. In the meantime, doctors and nurses from Jordan, the Philippines, India, Saudi Arabia and beyond are lining up to give up and coordinate their free time to join the Little Hearts missions. “The first time you’ll do it you’ll be addicted to it because, you know, it’s a beautiful feeling”, says Jamjoom, who has hung up his gloves and toured the final ward before children get to go home. There, Fima’s mother Shebaka is at her bedside, marvelling at the change in her daughter who still bears a huge T-shaped bandage from her operation two days ago. “She’s a completely different colour,” she exclaims, as Fima now has enough oxygenated blood running through her system. Before, Fima would miss three or four days of school a week, but now Shebaka can send her to school safe in the knowledge that she won’t collapse. “I used to see her heart beating furiously, and now it’s calm,” she says.

Aljazeera -Second Report

The cruel irony of congenital heart disease is that it affects people in poor countries most, but requires expensive treatment from highly-skilled and specially trained teams of medics found in wealthy nations.

In Bangladesh, a country just twice the size of Ireland but with more than 156 million people, 35 times its population, there are only a handful of surgeons with the skills to operate on babies or children weighing just a few kilos.

Congenital heart disease affects about nine in every 1,000 babies born in Britain. In Bangladesh, about 25 in every 1,000 babies born at the Combined Military Hospital in the capital Dhaka have heart defects.

Eighty percent of these babies are born to families living below the poverty line. Surgery to fix the problem costs around $2,000 in Bangladesh, and very few paediatric surgeons take on such high-risk cases.

Aljazeera -Second Report

Desperate parents can only appeal in newspapers for help to send their children abroad for treatment, or watch them wither from malnutrition, disease, or die suddenly from heart failure.

Charitable organizations such as Muntada Aid provide some hope. Through its “Little Hearts” project, it brings teams of volunteer cardiac and intensive care medics to countries including Yemen, Tanzania and Sudan.

Around 90 surgeons, cardiologists, anesthetists, doctors and nurses see as many children as possible du

ring their one or two-week stints. The aim in places like Bangladesh, which Muntada Aid has visited three times since 2013, is to train local staff to handle complex paediatric surgeries and aftercare and save thousands more little hearts.

Contribution from Dr Devy Shetty for Children of Bangladesh

Dr. Devy Shetty has a soft corner for the children of Bangladesh with heart disease.

In 2008 he agreed to train doctors & nurses from BD army who will provide pediatric cardiac care in CMH team.

CONCLUSION

The magnitude of a congenital cardiac problem is enormous and resource is limited, cardiac center and trained manpower is limited, Honest efforts are discouraged,  awareness program is not existing. In seminars, symposiums adult cardiology gets priority in our country, There is no prioritization policy for treating complex cases in any center in view of limited resources.

There is no entry criteria and no BMDC supervision/ criteria for working with kids heart.   Hospital administration or authority pressurize professionals for doing adult case and discourage pediatric case. All the centers are running joint program and everywhere pediatric people are fighting for their right with adult professionals.

So free, fair child friendly hospital environment and facility should be created in all cardiac center soon with equal or more opportunity for children . Intervention or surgery in a child will give him/her  a long disease free life to build golden Bangladesh.

 

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