The newborn was suffering from Congenital Lobar Emphysema, a rare condition that was correctly diagnosed and expertly treated
A male newborn developed breathing difficulties soon after birth at the hospital where he was born. The following 16 days at the hospital turned out to be a period of excruciating trauma for the infant and his parents as their child’s lung condition was repeatedly misdiagnosed, leading to ineffective treatment. The doctors performed X-rays and other tests and decided to put the infant on medication, keeping him under observation in the NICU (Neonatal Intensive Care Unit). But, the infant’s condition showed no significant improvement.
Each day passed with no relief for the baby or the parents. Eventually, the parents were advised to take their child home, with the prognosis that it could take three, six or twelve months for their child’s lung condition to heal and that they could, with the hospital’s help, set up an oxygen support system at home. This advice further alarmed the parents as they saw their child’s fate relegated to the vagaries of time by the hospital.
Unconvinced of the hospital’s advice and increasingly distraught at their infant’s deteriorating condition, the parents decided to seek medical care elsewhere. They had seen their baby suffer through 16 days of misdiagnoses and were convinced that taking him home would cost him his life. They needed to approach a hospital that guaranteed medical excellence and empathic care, so they went to American Hospital Dubai.
They met Dr Omendra Narayan, a Consultant Pediatric Pulmonologist at American Hospital Dubai, whose examination of the infant revealed acute respiratory distress in the form of fast breathing and pronounced chest indrawing. Further tests were carried out on the infant, including a contrast CT scan, and the results showed a rare condition in newborns: Congenital Lobar Emphysema (CLE).
Congenital Lobar Emphysema is a fetal development disorder caused by insufficiently formed bronchial cartilages that obstruct the airways, making breathing difficult immediately after birth. CLE can lead to recurrent chest infections or early on in the neonatal period, like with this baby with respiratory distress.
CLE occurs in 1 in 20,000 to 30,000 live births. If there is any suspicion on antenatal ultrasound, it becomes easier to suspect it at birth, prompting other investigations, failing which it can present later in infancy. The severity of CLE in this infant had caused his left lung lobe to expand significantly, and this hyperinflation distorted the right lung's position, pushing against the heart.
How was this condition missed in the earlier diagnosis? It is possible to miss the diagnosis as it is a rare condition, said Dr Omendra. He added that the absence of suspicion of disease and incorrect investigations can lead to a delayed or missed diagnosis. Not many pediatricians would suspect CLE if antenatal scans were routine. Chest X-rays do not always pick up the defect; a contrast CT scan is required to highlight the problem. A contrast CT scan uses a special dye, called contrast material, to help the scans show up brighter areas due to the contrast material, helping arrive at a precise diagnosis.
The 15-day-old infant required an urgent lobectomy or removal of half of the left lung. His parents brought him to American Hospital Dubai, and he was admitted to the NICU.
The initial misdiagnosis by a hospital and the consequent delay in delivering the correct treatment were setbacks that American Hospital Dubai had to overcome. Additionally, the infant's condition and his tiny size also presented severe challenges to the clinical team. The infant had to be successfully supported throughout the procedure to continue breathing while removing one side of the lung under prolonged anesthesia, which made the procedure highly complex. But the team's exceptional calibre, experience and care ensured the operation was successful.
The team undertook every precaution and due diligence before the operation. Pre-operation checks included a flexible bronchoscopy and a camera test, performed by Dr Omendra to ensure no blockage in the breathing tube, followed by the lobectomy procedure by Dr Gursev Sandlas, Consultant Pediatric Surgeon, American Hospital Dubai.
American Hospital Dubai's leadership and excellence in complex surgeries, its accurate and precise diagnostic reliability, and multidisciplinary treatment and care protocol have consistently led to positive outcomes, earning the hospital a distinguished name in medical excellence
"We had an excellent pediatric anaesthetist, Dr Ahmed Abdel-Aziz, who could ventilate the newborn with just one lung to facilitate this complex surgery," explained Dr Omendra. Other team members in the 5-hour procedure included Dr Sridhar Ramaiah, Consultant Neonatal Intensivist; Dr Osama Hamud, Consultant Neonatal Intensivist; and Dr Chetan Gupta, Consultant Pediatric Intensivist.
Further neonatal intensive care, support from pediatric intensive care when the baby was unwell post-operatively, and joint care from sub-specialists, junior doctors, excellently trained nurses and physiotherapists were vital to ensuring the infant’s recovery.
American Hospital Dubai's integrated care by its pediatric neonatal intensive unit, with the support of sub-specialists, trained nurses and physiotherapists, helped the infant recover successfully. He was discharged on July 10. The baby is now stable, breathing normally, growing and gaining weight.
TESTIMONIAL: A FATHER'S ETERNAL GRATITUDE
Wassim Mahouk, the infant’s father, expresses his gratitude to American Hospital Dubai for saving his son’s life:
My son was born at a hospital on May 27, 2024. My wife had an elective C-section, and I was in the OR with her. He is our second baby.
When the pediatric doctors saw my son, I sensed a nervousness in them. I had yet to see my newborn son correctly, but I noticed they were talking about him being distressed. There was something wrong with his breathing, they said, and that he needed to be taken to the NICU immediately. We will run some tests and do an X-ray, they told me.
I realized my son was in extreme distress. He was struggling to breathe. The initial diagnosis was wet lungs. The condition can happen in C-section babies, but he will get better, they said.
They also decided to do a CT scan. Post the scan, the second diagnosis was that my son had an underdeveloped right lung. They said we would have to help his left lung adapt to the role of the right lung.
We waited another week, but there was no improvement in my son's condition. He was getting worse. It had been ten days since he was born, and it looked like he was subjected to repeated misdiagnoses. Meanwhile, he was being given full oral feeds despite his condition. Watching him was like observing a light being turned off slowly.
It had been 16 days, and my son was nowhere close to getting better. Finally, we were advised to take him home and continue his care with an oxygen support system the hospital said would help us set up. It was clear the doctors here did not know what they were doing. If I had followed their advice and taken my son home and set up the oxygen support as they suggested, he would have probably not survived.
My wife and I decided we needed to get the proper care for our son. We chose Dr Omendra Narayan, Consultant Pediatric Pulmonologist, American Hospital Dubai, because he is acknowledged as the top pulmonologist, and the hospital's medical excellence and commitment to patient care are well known.
I met Dr Omendra with my son’s reports; from then on, he and his team took complete charge. The previous hospital's CT scan was unclear, but Dr Omendra offered four potential diagnoses. We needed to transfer our son to American Hospital and begin immediate treatment, he said.
They ran tests and did a contrast CT scan. When the tests were complete, I was called for the meeting. I walked into Dr Omendra's chambers to find the entire team of doctors present. There were about 10 of them, and they gave me their undivided attention.
They told me my son had a condition called Congenital Lobar Emphysema (CLE), which occurs in 1 in 20,000 to 30,000 live births. It was not genetic, and it was still unknown what causes CLE in newborns. He required immediate surgery on his left lung. Usually, newborns with CLE are operated on within 3-4 hours of birth, and they were surprised my son had pulled through 16 days with such severely impaired breathing abilities.
We had tough conversations, and I was told hard truths. There is a 48 per cent mortality rate, they said, but we have to give the child a chance.
As a father, it was a gut-wrenching moment. But I wanted to give my son every chance at life, and I signed the consent papers. My wife and I were nervous wrecks.
On June 13, my son, who was barely two weeks old, underwent a five-hour operation under the care of American Hospital's team of doctors.
They provided outstanding care and commitment. Every single member of the team was exceptional. Dr Omendra was 100 per cent sure that my son had CLE, but he still insisted on a bronchoscopy to be 1,000 per cent sure. I do not have sufficient words for their efforts. Even when there was an extended episode of bleeding after the surgery that was a critical development, they kept up with their unceasing efforts. At no point did they give up on my son.
I remember waiting for the news as they fought to stop the bleeding. It was my bleakest phase. Would my son survive? Would I be able to take my son home? Would I ever be able to see him healthy and cured?
I heard footsteps approaching me, and I braced myself for whatever was coming. "The bleeding has stopped. Your son is stabilized." But he was not out of the woods yet.
Soon, under their care, my son started getting better, waking up and stabilizing. He was discharged on July 10, and we brought him home. Our baby looks good, sleeps well and breathes fine. When he wakes up and cries for his feed, it brings us indescribable joy. Dr Omendra is constantly monitoring the progress of my son’s lungs.
There is no match for the quality of care given by American Hospital Dubai. What I found remarkable was that at no stage did American Hospital Dubai make me feel helpless. They kept discussing, coming up with possibilities and rallying around for my son. From the diagnosis to the treatment and empathy, the level of care in their NICU is outstanding. Every single member of the team, the doctors, nurses, and technicians, saved my son’s life many times over. I don't know what to say, do or give for what they have done for my son.
I am eternally grateful.
قصص المرضى
الرئيس آرثر مبانيفو، 91 عامًا، سفير سابق لدى الأمم المتحدة وممثل دولة نيجيريا، يشكر المستشفى الأمريكي دبي على الرعاية الطبية المميزة التي تلقاها بإشراف نخبة من أفضل الأطباء الاستشاريين
