Abu Dhabi: Newborn babies born with heart abnormalities in Abu Dhabi Emirate can now be safely monitored at home while they await corrective procedures.
The Abu Dhabi Health Services Company (Seha), the emirate’s public health provider, launched its Interstage Monitoring Programme, to monitor babies born with severe abnormalities, including hypoplastic left heart syndrome as well as other conditions in which only one side of the heart is functioning.
Babies with these conditions normally have to undergo an initial open-heart surgery in their first few days of life, followed by a second surgery six months later. In between the two procedures — the interstage period — patients are discharged, and the new monitoring programme will make this fraught period safer.
The paediatric congenital cardiac team at Sheikh Khalifa Medical City (SKMC), one of Seha’s premier medical facilities, cares for 50 to 60 babies born with severe congenital defects each year.
Interstage period risks
The interstage period places infants at an increased risk of death. About 20 per cent of children born with complex heart conditions pass 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 this period.
“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 program that enables the continuous monitoring and care of infants at home during the waiting period,” said Dr Anwar Sallam, group chief medical officer at Seha.
The dedicated team monitors the infant’s well-being 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 care team 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 readmission.
“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,” said Dr Victoria Sheward, consultant paediatric cardiac intensivist at the SKMC.
Since July 2020
The monitoring programme was established by SKMC in July 2020, and currently has close to 30 infants enrolled for home monitoring. Till now, three of them have been identified to be nearing critical conditions as a result of their declining health, and f urgent intervention was arranged for them through the programme.
“Thanks to the programme, the lives of three infants were saved, ensuring their survival and sustaining their health for the second stage of their cardiac surgery,” said 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 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 interstage monitoring programme. The family was given a machine to monitor his oxygen levels at home, taught to perform basic life support, and informed of warning signs.
The monitoring 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 medical team were able to inform the rest of the Paediatric Cardiac Surgical team when Rayan was ready for his second cardiac operation.
Readmission to SKMC was arranged, and Rayan successfully completed his second open-heart surgery in December 2020. He is now back at home with his parents.
“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,” said Aya, Rayan’s mother.
The SKMC has till date completed more than 4,500 paediatric cardiac surfies for children. Since 2011, Abu Dhabi’s hospitals have also carried out pulse oximetry tests to detect critical congenital heart diseases in newborn babies.