Giving hope to parents and life to a child! An update!

The situation in our world is crazy. There are men who are at loggerheads, ready to nuke each other and destroy millions of innocent people in the process, by just pressing a button. In this hopeless scenario, incredibly, there are also those who focus on curing a child with a rare disorder to breath easily!  They use the latest technology available for them! 

One such person is my dear friend Dr. E V Raman. When Raman and I meet our conversation  often ends with an update on the Children's Airway & Swallowing Centre he started. It began 25 years ago!

He is with the department of ENT at Manipal hospital, and extremely busy. At the same time he is involved in helping the patients who are unable to afford the huge costs involved in medical care. 

A few days ago we had met and at my request he had shared with me a news clipping and an article he wrote. I had begun to blog about it, but did not complete it. Perhaps I was waiting for a trigger! Raman sharing an inspiring story today was the trigger!

Here is the amazing and inspiring story shared by Dr.Raman :

Sharing a true story 

On Christmas Day, we had a patient , 10 year old , one of a twin with post intubation glotto subglottic laryngeal stenosis - high grade 3 almost grade 4 referred to us for revision Larngo- tracheal reconstruction from Karachi.After 3 surgeries over a period of 8 months we successfully decannulated the patient - during their multiple visits ( on my request ) a prominent builders family ( my patients ), gave them free accomodation in one of their flats. A year later I heard that when the builders family needed a kidney transplant donor ( after an unsuccessful attempt in India ), the Pakistani family arranged for a donor and the transplant was successfully carried out in a third country. So no humanitarian effort goes waste- you get your reward when you need it .

Children’s Airway and Swallowing Centre ( CASC), Manipal Hospital, Bangalore, India.

Merry Christmas and a Happy New Year !This also highlights our mission - “Sharing and Caring across Borders “.

I urge you to read the inspiring story narrated by Dr Raman!

A summary of his article:

The Mission of the Children’s Airway and Swallowing Center ( CASC) - Demystified.

Thanks to improved accessibility of health care services in India, the neonatal  ( 0 to 30 days ) and infant ( 1 month to 1 year old ) mortality rate has come down significantly . Low birth weight, premature babies , babies with certain congenital abnormalities who would have died, are living. Unfortunately all this comes at a cost, many of these children require neonatal or Pediatric intensive care and may require support on ventilators ( to enable them to breathe ) and are tube fed to support their nutritional needs . Some of them whose infirmities are successfully managed  continue to have breathing and swallowing disorders .So they breathe through a hole made in the neck

 ( tracheostomy) and are tube fed preventing their return to home, schools and play grounds. The parents are left with diminished finances , low morale and a lessened trust of the health care system. Currently we have won the battles but lost the war in the care of these children of a lesser God . They are outside the radar of the health care system, many of them require continued care at home away from hospitals at home . This is a huge burden on the parents, many of them have to leave their jobs to take care of these children.

The solution requires intervention by a multi disciplinary team of doctors, Pediatric intensivists, neonatologists, gastroenterologists, pulmonologists,anaesthetists, Speech and Swallowing therapists led by Pediatric Airway Surgeons. This leads to a substantial cost burden which most families cannot afford- Insurance companies do not cover congenital disorders in the miniscule population which is insured. Most children lose thei lives due to lack of affordability apart from accessibility to  specialised quarternary Heath care facilities.

Moreover unlike Pediatric cardiac or cataract surgeries , these are not amenable to routine, repetitive, assembly line procedures. 

In order to take care of these children, an integrated, interdisciplinary group called the Chidren’s Airway and Swallowing Center was established in 2000 functioning out of Manipal Hospital, Old Airport Rd, Blore. 

More than 90%of the treatment including complex multistage surgeries are done at highly subsidised rates or totally free. This has been possible due to free services extended by the volunteer medical team,support from Manipal Hosp management ,community and corporate donors.More than 2900 children’s lives have been touched and 80 to 100 professionals from India and several other countries have been trained by the best global faculty of experts in this field in the last 25 years.Most of the children have been referred from government hospitals and some of them have been sent back for post op care in selected cases- a successful example of  a “ Private - Public Partnership in Healthcare”.

“ Caring and Sharing Across Borders “ is what we have achieved by taking care of children in South Asia, Middle East and Africa.

Our goal is that no child should be deprived of care because of lack of affordability- now we want to increase accessibility by creating the awareness of the existence of such a Center in India .

The original article:

Challenges of building a team where there is no stadium:

 Dr. Eswaran V. Raman

International Journal of Pediatric Otorhinolaryngology 

https://mail.google.com/mail/u/1/hl=en#sent/QgrcJHsBnjvRGSGMVkLnjjDdVFJHnmtrvwL?projector=1&messagePartId=0.1

Please read the 3 page report and learn about the noble work done by a team of doctors! 

Briefly it covers: 

1. Introduction: India contributes 27 % of global neonatal deaths, 40 % of low birth weight (LBW) babies, and a quarter of pre-term births.

2. Good news:......  the current availability of doctors marginally exceeds the WHO recommendation. A Newborn Action Plan (NAP) was initiated in 2016 by the National Health Mission of India to reduce the neonatal mortality rate (NMR) to a single digit by the year 2030.

........Advancements in ventilation techniques, availability of skilled manpower, and organized neonatal transport are now available in multiple regions in the last 10 years. The infant mortality rate (IMR) is a rough indicator of the overall health scenario of a country, and the latest statistics set forth an encouraging picture – as the IMR has seen a dip of 42 %  from 2006 to 2017.

3. Challenges: ...Better outcomes in the survival of infants, due to evolved intensive care facilities have set forth new challenges. A significant number have airway and swallowing problems.

 These require different types of skills, from counseling and therapy to skilled surgery which enables their return from ICUs to their homes, schools, and playgrounds.

4. Hurdles: In India, lack of medical insurance has resulted in a huge out-of-pocket expenditure. 65 % of health care cost is paid for by families rather than the government or insurance providers. Most of these patients have already expended their monetary resources and cannot afford further care. ....We also found poor interdisciplinary communication, and skill inadequacy of the medical team as additional impediments.

5. Serendipitous beginning: Our hospital, now part of a nationwide corporate chain of 33 hospitals, launched an enhanced high-volume pediatric cardiac surgery program in the year 1999. As the patient turnover increased, we, ORL surgeons, were called to help out with children diagnosed with airway and swallowing disorders.

 The challenge was to provide highly subsidized or free care for these children, as the parents’ monetary resources had already been expended for the cardiac procedure and prolonged ICU stay.

6. Charity begins at home We created an interdisciplinary volunteer group of doctors, including intensivists, neonatologists, pediatric anesthetists, pulmonologists, gastro enterologists, and swallow therapists, led by otolaryngologists, who decided to offer their services for no charge. Most of us saw this as an opportunity to pay our dues to society. The Children’s Airway and Swallowing Center (CASC) was set up in the year 2000. 

 To win the support of the management, we volunteered to collect funds from the community and corporations to pay for the mounting hospital bills of these children.

7. Fund crunch: The professional fee waiver of the medical team made a very small impact on the final bill of these patients. Children with complex airway problems require multiple interventions in many cases. Starting from evaluation, surgery (in many cases multi-stage procedures), intensive care, tracheostomy management, and finally decannulation was both expensive and time-consuming. Current insurance plansdo not cover congenital diseases in our country.

Attempts to get funds from charitable organizations proved futile as they preferred to fund procedures like cleft palate repair, cardiac surgeries, and cochlear implants where the cost per case and outcomes are predictable. Donations from satisfied patients helped finance a few surgeries. This was not sufficient as the caseload increased.

The Government of India mandates that companies are required to spend a minimum of 2 % of their net profits over the preceding 3 years as part of their Corporate Social Responsibility (CSR). It was imposed as an obligation on companies to take up CSR projects towards social welfare activity. Most of the funds are used for rural development, providing water supply, education of underprivileged children, low-cost housing, etc. We made a pitch for getting some of these funds for charitable airway surgeries and care for children with aerodigestive disorders. This helped raise a total of 4 crore INR

We persuaded our corporate hospital chain to waive off all charges except for medical equipment, radiology, and laboratory charges, as part of their contribution to CSR. Patients coming from government hospitals were evaluated, treated, and sent back for recuperation to their original hospitals and monitored via video consultations, thereby reducing the expenditure. 

8. Upskilling...... we did not want to compromise on the quality of care, albeit subsidized. Initially, we contacted fellow surgeons from well-known Aerodigestive Centers across the globe, to volunteer their services to train and assist us in complex surgeries.

..... meetings on pediatric airway and swallowing disorders were organized, with volunteer faculty from a host of aerodigestive clinics from Europe, North America, and Australia. This international faculty travels to India at their own expense and offers their services, laryngeal stents, tracheostomy tubes, and airway balloons free of cost.

...offers lectures, unedited surgical videos, live telecasts of surgeries, hands-on workshops on bronchoscopy, costal cartilage grafting, pediatric tracheostomies, surgical procedures on goat airway and 3D printed larynx and trachea. 

Each of these courses was attended by 80–120 ENT surgeons with a special interest in the pediatric airway, anesthetists, and pediatric intensivists with a keen interest in the upper aerodigestive system. 

During the 6th International Update on the Management of Pediatric Airway and Swallowing Disorders 2023, a total of 33 patients were evaluated and operated in 6 days. 

9. Results & outcomes of international collaboration over the past 20 years, we have managed more than 80 complex airway cases during our International updates and live surgical training sessions. 

Various surgical procedures were demonstrated live by experts in this field from countries like the United States, Switzerland, Australia, and the United Kingdom. The data about pathologies, surgical procedures.

A total of 117 cases were evaluated and managed surgically duringthe workshop. Zoom meetings helped visiting and in-house surgeons inpre-operative planning and post-operative care to ensure best possible outcomes. Most of the airway reconstructions were two stage procedures to reduce cost and hospital stay, especially for outstation patients.

Overall, 87 % of cases were successfully decannulated. We had 4 %mortality due to non-airway related complications during the post-operative period except one who had a tube block and could not be revived.

While evaluating the feedback from attendees, we found that a total of 237 otolaryngologists took part in this training program over the past20 years with 137 doctors attending more than three updates. The feedback showed 92% satisfaction with the training module and 89% submitted “more than expected” responses with regard to live surgical demonstration and hands on work stations.

10. Expansion Over a period, pediatric gastroenterologists, swallow therapists, pediatric pulmonologists, and fetal medical specialists became a part of the collective. Two fellowship programs in Pediatric otolaryngology with emphasis on pediatric airway were set up. During the COVID years, we organized the International Pediatric Airway Surgical (IPAS) Webinars in collaboration with C Surgeries with faculty from 5 continents and a global audience 300 pediatric otolaryngologists. https://csurgeries.com/webinar_series/ipas/page/2/

11. Consolidation We have taken care of almost 2600 children in the last 23 years, most of them free of charge. We have extended our services to countries like Nepal, Bangladesh, Pakistan, Sri Lanka, Maldives, Mauritius, UAE, Ethiopia, and Kenya.

We are the only interdisciplinary pediatric aerodigestive center for a country of 1.42 billion. An initial attempt to clone ourselves led to the development of 2 satellite centers - 2831 and 1437.6 km away. For resource-constrained countries, the interdisciplinary model is the answer. Delivery through an interdisciplinary care model is not only of high quality but also of good value . Global educational curriculumhas the potential to bring skills that are otherwise unavailable locally 3D simulators manufactured in the United States were brought by the educational team to our course held in India. This helped our missionof “Sharing and Caring Beyond Borders”. International recognition followed in the form of the Gray Humanitarian Award given by the Society of Ear, Nose and Throat Advancement in Children (SENTAC). https://sentac.org/2023-annual-meeting/

12. Conclusion Pediatric otorhinolaryngology as a subspecialty is still in its infancy in India. Our aerodigestive center has brought together a large number of otolaryngologists with a special interest in pediatric ORL. This has resulted in several regional conferences and workshops dedicated exclusively to pediatric ORL. Currently, 3 medical universities are offering fellowship training in this subspecialty in our country and we hope that the number will increase soon.

https://youtu.be/ezQr1WChyKg a video about the 25 years of CASC

An earlier blog :

 https://nidhiramblers.blogspot.com/2017/12/ giving-hope-to-parents-and-life-to-child.