Status of Congenital Heart Disease in Bangladesh – 2017

A Status Report

By: Prof (Brig Gen) Nurun Nahar Fatema Structural and interventional Cardiologist , Head Of Pediatric cardiology CMH Dhaka

Introduction

Pediatric cardiac care in Bangladesh is still in its  infancy. 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 is no specialized Pediatric cardiac training programs. One or two which are existing are often imparted through combined adult and Pediatric programs.

The existing number of trained personnel in pediatric cardiology(12-16) and pediatric cardiac surgery(6-8) is scanty.
There is no national policy  yet for pediatric heart care.
Heart disease has not given any importance in        (Integrated Management of Children Illness).

Situation is improving gradually since 1998 when first pediatric card unit started giving service delivery in formal and  methodical way in CMH Dhaka.
Also awareness among pediatricians are increasing through
– CME’s.
– Seminars.
– Symposium.

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

FCPS in Ped cardiology was our dream and now it has been introduced in BCPS.
Curriculum and Log book for FCPS was also prepared.

MD course already started in BSMMU.

Definition Cong Heart Disease

Congenital heart disease refer to structural

or functional heart-disease, which are

present-at-birth or even if discovered later.

These are manifested on-

  • Neonates
  • Infants
  • Children and
  • Adult with uncorrected CHD
  • 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.

(Ref: Book on Congenital Cardiac interventions & Reasearch work in Bangladesh published-2011 By Dr Nurun Nahar Fatema)

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.

In Armed Forces Hospital neonates comprises 15% of all echocardiography carried out in NIC lab. The commonest CHD in neonate in our country is atrial septal defect followed by PDA and VSD.

In other hospitals neonate comprises 10-12% of all echocardiography in out patient department.

(Ref: Book on Congenital Cardiac interventions & Reasearch work in Bangladesh published-2011 By Dr Nurun Nahar Fatema)

RESOURCES AND INFRASTRUCTURE

Facilities for pediatric cardiac care – limited.
6-7 hospitals has limited facilities.

Other 7-8 cardiac centers have busy adult cardiac programs.

Infrastructures are shared by adult and pediatrics in all hospitals.

Only 2% of the total children with CHD who need surgery is actually receiving optimal treatment.

Two percent of these infant have co-morbid condition like chest infection, pulmonary hypertension, pulmonary vascular disease etc which increase mortality morbidity.

Rest 98% do not survive.

Reason for poor cardiac care

  • Very small fraction of CHD cases are detected at birth and during pregnancy.
  • Majority of birth are not supervised by pediatrician.
  • Ability of most pediatrician to detect CHD is limited (Inadequate exposures to pediatric cardiology activities by postgraduate trainee)
  • Most pediatrician believe that a newborn baby with CHD has a near 100% mortality.
  • Due to limited knowledge of referral, history of CHD, there is considerable time – between diagnosis and referral.
  • Pediatric cardiac care is too expensive for average family of the country.
  • There is very little or no subsidy from the pharmaceutical industry in this program.
  • Social importance of pediatric cardiology and cardiac surgery is much less than adult. Given a choice, very few specialist will choose pediatric cardiology and cardiac surgery over adult cardiology and cardiac surgery.
  • Pediatric cardiac care is available only in Dhaka. Facility seekers have to travel hundreds of miles to avail it.
  • Some pediatrician believe that operation can only be done when he or she will attain 10 kg.Poor or no documentation of procedures and OPD attendance.
  • Patience and sharpness to deal with children is absent in many service providers.

Suggested solutions

  • Increasing awareness about CHD in general population through electronic and print media. Bangladesh pediatric association, Child Heart Trust Bangladesh and pediatric cardiac society of Bangladesh can play role in this regard.
  • Increasing awareness among pediatricians through seminars, symposium, CME’S etc.
  • Pediatrician should be trained to recognize CHD in neonatal period.
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.)
    • Financial assistance should be provided by
  • (a) Govt. agencies through welfare fund/policies, Lottery.(b) NGO’s(c) International and national charity organization.
  • Training of local staff by bringing staff initially from well developed centers.
  • Prioritization of case as resource is limited. Very complex cases and cases who needs multiple surgery may be excluded in initial stage
  • Govt. policy and creation of national database.

Intervention in CMH Dhaka Ped cath lab 2013

Table-I: A frequency of congenital heart disease among hospital live birth (2004-2006).

Table-II: Percentage of positive Echocardiographic findings in suspected newborn and newborn for screening(In CMH ECHO LAB) 2004-2006

Table – III: Percentage of newborn echo in Lab Aid Cardiac Hospital in Ped lab 2009

Work load of Pediatric Cardiology Unit CMH Dhaka ( 2000—2017 )

Cath lab Statistics upto 2017

Diagnostic catheterization 5024
Various interventions 4036

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

Statistics of various types of interventions up to 2017

Available treatment  facilities :Newborn (Achievement)

Many Newborn of our country are dyeing 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

  1. BALLOON ATRIAL SEPTOSTOMY
  2. PDA STENTING
  3. CRITICAL STENOTIC LESIONS  VALVOPLASTY AND ANGIOPLASTY.

Neonatal Surgeries/corrective/Palliative

  1. Arterial switch
  2. Rerouting TAPVC
  3. Coarctation Repair
  4. Repair of IAA
  5. BT Shunt
  6. Pulmonary artery banding

Neonatal cardiac surgeries are not available yet for majority of patients. Arterial switches are performed in two centre occasionally but not as a routine. BT shunt in a newborn is still difficult. Pulmonary artery banding is like dream. Rerouting TAPVC done once in a while.

History of Intervention: BD

  1. Percutaneous closure of PDA 1999
  2. Percutaneous closure ASD 2000
  3. Percutaneous closure VSD 2004
  4. Coronary fistula 2006
  5. CoA stenting 2008
  6. PDA stenting 2006
  7. Large vessel stenting 2008
  8. RVOT stenting 2004
  9. Angioplasty and valvoplasty 1999
  10. Pulmonary valve replacement 2012

History of cardiac surgery in BD

  • There was a glorious history of congenital cardiac surgeries since late 70,s. In Bangladesh,
  • first ever Blalock Taussig (BT) shunt was performed in early 80,s in NICVD by Prof S R Khan.).
  • Ligation of PDA was performed in 1979 (Prof: S R Khan and team ),
  • ASD closure in 1981 ( Prof N A Khan and team),
  • VSD closure in 1991(Prof S R Khan and team),
  • successful TOF repair in 1992( S R Khan and team),
  • Bidirectional Glenn shunt 1995 (Prof: S R Khan and team) ,
  • Mustard open 1996 (Prof S R Khan and team)
  • Modified Fontan 1997 (prof S R Khan and team),
  • Senning opn 2001 (Dr Asist B.A and team) ,
  • Rerouting TAPVC 2002 (Dr Asit and team),
  • Lecompte procedure 2006 (Dr Asit B A and team),
  • Arterial switch operation 2007 (Dr Jahangir Kabir and team) .

Pediatric cardiac care in Bangladesh

Following hospitals has Paediatric cardiac care

  1. Combined Military Hospital, Dhaka
  2. National Institute of Cardiovascular Diseases (NICVD
  3. National Heart Foundation
  4. Bangabandhu Sheikh Mujib Medical University
  5. Dhaka Shishu Hospital
  6. Ibrahim Cardiac Hospital
  7. Lab Aid Cardiac hospital
  8. United Hospital
  9. Square Hospital
  10. Apollo Hospital

ACHIEVEMENTS

Intervention: Stenting of PDA, RVOT stenting, Pulmonary Valve Replacement (first ever in South Asia in 25.12,2012)

HIGHEST INTERVENTION IN RECORD TIME 4 HOURS IN LAB AID/DATELINE 26.9.14 , 8-10 AM – 12-15PM (Shortest time taken / internet ref)

  1. Snare assisted PDA device closure in twisted PDA.
  2. PDA device closure in a new born.
  3. Double intervention in single sitting ASD Device and BVP.
  4. VSD device closure with ADO11.
  5. ASD device closure with cera.
  6. PDA device Closure in an adult with Eisenmenger change.

MEDICAL MANAGEMENT OF NEWBORN CHD (Achievement in reducing neonatal mortality)

  • Manipulation of PDA for keeping it open or to close Experience 459 neonates.
  • SVT Experience 178 neonates.
  • Treatment of PPHN Experience 1534 neonates with protocol N N F.
  • Treatment of PFC Experience 198 neonates Protocol N N F.

Ref : Journal of cardiology 2012:4(1):492-495

ACHIEVEMENTS

Surgery: Surgery in newborn babies and young infants, complex and high-risk surgeries in some places like national heart foundation, Ibrahim Cardiac Hospital & Research Institute.

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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