Ectopia Cordis Repair: Ayesha’s journey of recovery
April 2, 2021 | Contributed by R Srivatsan
At only 42 days old, Ayisha is the youngest baby in Kerala, India to have undergone Ectopia Cordis Repair – which isone of the rare forms of Congenital heart defects in children.
Born on 23rd January 2021, weighing 2.9kgs, Ayisha Eshal Nishad P is the only child of couple Shamma and Nishad from Palakkad, in Kerala. Immediately after birth, the doctors observed that the baby girl had pulsations of the heart and the great vessels could be seen on the chest wall.
With each cry that little Ayisha let out, her heart could be seen coming out to the naked eye.As if this wasn’t hard enough for the baby and the family to endure, straight after birth, she even had dislocation of the left hip joint. Her parents couldn’t even take in the joy of her arrival and they were already worried to death with her health.
The doctors decided that the first step was to treat the dislocation by putting a plaster on the left hip. She was discharged 9 days later and all the expenses of the delivery and treatment were only possible for the family under Ayushman Bharat Scheme.
Then the next step was to look at the congenital heart defect that the baby was suspected to have, so the family was referred to a private pediatrician (Dr Shahjahan) in Palakkad. After examination, the family were referred to a private diagnostic centre for an Echo and CT scan – the results showed the rare CHD called Ectopia Cordis with Partial Sternal Cleft. Ayisha did not have a sternum, whereas, a healthy baby’s heart is covered by the sternum.
She required an urgent heart surgery, which naturally worried Shamma and Nishad as it also put stress on their capability of funding it, so they spoke to the doctor at length and he referred them to Amrita Institute of Medical Sciences, in Kochi for further management.
Only around two weeks old, Shamma and Nishad took Ayisha to Amrita Institute of Medical Sciences in Kochi by train where she was seen by Pediatric Cardiologists Dr Krishna Kumar and Dr Mahesh. When the Echo was repeated, there was a new revelation – Ayisha also had an atrial septal defect (ASD) which is a hole in between the upper chambers of the heart. Both Shamma and Nishad felt devastated because they couldn’t believe that their two-week old bundle of joy had not one, but two heart defects.
With the use of innovation available today, Dr Mahesh and his team did a 3D reconstruction of the chest wall and found that it was an incomplete sternal cleft where the lower part was fused. The family were counselled about the risks involved with the surgery, and naturally scared they wanted to go back home and consult their seniors.
Once again we were witness to how awareness plays an integral part in the lives of children born with Congenital Heart Defects. If families are more educated on the severity of timely treatment, it would give them the opportunity to act faster with the knowledge available.
After much deliberation with their family, Shamma and Nishad came back on 3rd March ready for admission and treatment of their baby girl. They felt a little relieved as our partner hospital Amrita Institute of Medical Sciences had committed to supporting Ayisha’s case seeing has Nishad earned a monthly income of Rs 5000 as a tempo driver and needed financial support to save his little girl. In fact, Ayisha is the first such rare case of Congenital heart defects in children that we have ever supported,through our CSR partnership with SBI Life Insurance.
On the 5th of March, Dr Brijesh (Pediatric Cardiac Surgeon) and Dr Sundeep Vijayaraghavan (Plastic Surgeon) operated on the baby together. The successful surgery lasted for four hours and the family were relieved as the ventilator was removed after 48 hours. Ayisha was breast-fed for the first time since being born,and this brought immense relief and happiness to Shamma as a mother. She has made good recovery and was discharged on 15th March in a stable condition from the hospital.