Abu Dhabi Health Services Company (SEHA), the UAE’s largest healthcare network, has introduced an Interstage Monitoring Program (IMP) for newborns with heart abnormalities that require multiple surgeries. Implemented by a dedicated and highly specialized group of physicians, nurses and administrative staff for the first time in the UAE, the program helps to monitor infants while they are at home waiting for their next cardiac surgery.
Infants born with the most severe types of heart abnormalities, such as hypoplastic left heart syndrome, and other conditions in which only one side of the heart is functioning, normally undergo an initial open-heart surgery in their first few days of life, followed by a second heart surgery after six months. Patients are discharged during the wait between the first and second surgery. The pediatric congenital cardiac team at Sheikh Khalifa Medical City (SKMC), a SEHA-affiliated facility, look after 50 to 60 newborns with these conditions every year.
The time between the two surgeries, known as the interstage period, places infants at an increased risk of death, with approximately 20% of children born with complex heart conditions passing away in the lead-up to the second surgery. To help parents monitor their infant’s condition and to ensure timely medical intervention if necessary, a group of cardiac intensive care physicians, nurses and administrative employees from SKMC have come together to provide continuous monitoring and medical counseling during the interstage period. This helps to keep them safe and healthy in the lead-up to the second procedure.
Dr. Anwar Sallam, Group Chief Medical Officer, SEHA, said: “Newborns face a higher risk of death during the interstage period, due to the increased toll a simple virus or other infections can have on an abnormally developed heart. With parents not knowing what to watch out for, and how rapidly a newborn with a heart abnormality’s health can deteriorate, the SKMC pediatric cardiac surgical department have taken the lead in introducing a program that enables the continuous monitoring and care of infants at home during the waiting period.”
The IMP team monitors the infant’s wellbeing from the moment they complete their first open heart surgery to the day they are readmitted for their second procedure. Before the newborn is discharged, the team counsels the family on how to look after them, explaining how delicate the infant’s condition is and educating them on warning signs of deterioration. Once the newborn is home, the IMP team then establishes regular contact with the family through telemedicine consultations – either daily or weekly depending on the condition of the infant. During these calls, the team of medical professionals consult the family on the infant’s various vital signs including weight, oxygen levels, feeding habits and general condition. If problems are identified, families are given clear instructions on how to proceed, and if the situation becomes critical, arrangements are quickly made for referral to hospital and re-admission.
Dr. Victoria Sheward, Consultant Pediatric Cardiac Intensivist, SKMC, said: “Of the approximately 350 corrective heart surgeries we perform on children each year, around 60 infants require a follow-up open-heart procedure after around six months. By introducing the interstage monitoring program, we are letting parents know they are not alone during this journey and providing them with the support they need to keep their newborns safe, healthy and alive as they wait for their second operation.”
The program was established by SKMC in July 2020, and currently has close to 30 infants enrolled for home monitoring. To date, three of them were identified to be nearing critical condition as a result of their declining health, and for whom urgent intervention was arranged through the program.
“Thanks to the IMP, the lives of those three infants were saved, ensuring their survival and sustaining their health for the second stage of their cardiac surgery. Thanks to the prompt response of the IMP team, their wealth of expertise, and their close rapport with the families, we were able to quickly intervene and address their deteriorating health,” continued Dr. Sheward.
Rayan was born in June 2020 with a severe form of heart abnormality, in which the whole of the right side of his heart had not developed properly. This condition meant that he needed life-saving open-heart surgery within the first few weeks of life, which was done at SKMC in July. After a prolonged stay in the Pediatric Cardiac Intensive Care Unit, Rayan returned home at the end of July. Before he was discharged, Rayan and his family were enrolled in SKMC’s IMP, where they were given a machine to monitor his oxygen levels at home, were taught how to perform basic life support, and were informed of warning signs to monitor for. The IMP team contacted Rayan’s parents every week, advising them on feeding habits, the infant’s growth, and how to manage if problems were identified. By monitoring Rayan’s growth and oxygen levels, the IMP team were able to inform the rest of the Pediatric Cardiac Surgical team when Rayan was ready for his second cardiac operation. As a result, readmission to SKMC was arranged, and he successfully completed his second open-heart surgery in December 2020. Rayan is now back at home with his parents, thanks to the combined efforts of the IMP team, and the whole of the surgical, cardiology and intensive care teams.
“Rayan is my first baby. SKMC doctors diagnosed a congenital heart defect, so he underwent an initial open-heart surgery in his first few days of life during COVID-19, followed by a second heart surgery on the 15th of December 2020 after six months. It was one of the toughest times of my life, as my parents were away from me in Syria, but the SKMC team was very supportive and took care of my baby by making continuous follow-up calls,” Aya, Rayan’s mom said.
SKMC operates the largest program of pediatric cardiac surgery in the country, and treats complex cardiac abnormalities in newborns and infants. As part of its mission to meet international best practice and bring global healthcare expertise and processes to the UAE, SEHA and its facilities are ensuring patients are supported, throughout the entirety of their treatment journeys.
