Seha starts monitoring infants at home with heart ailments

Abu Dhabi Health Services Company (Seha), the UAE’s largest healthcare network, has introduced an Interstage Monitoring Programme (IMP) for newborns with heart abnormalities that require multiple surgeries. Implemented by a dedicated and highly specialised group of physicians, nurses and administrative staff for the first time in the UAE, the programme 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 paediatric 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 counselling 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 paediatric cardiac surgical department have taken the lead in introducing a programme that enables the continuous monitoring and care of infants at home during the waiting period.”

Dr. Victoria Sheward, Consultant Paediatric 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 programme, we are letting parents know they are not alone during this journey.”

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 Paediatric 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 Paediatric 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.