EPISODE #004 – Ayarah
DIAGNOSIS: Down Syndrome, Perineal Abscess, Congenital Heart Disease, Upper Moristral Infection, Pulmonary Infection.
BACKGROUND:
Ayarah is a 3-year-old girl with Down syndrome. She was born on February 15, 2020, during a time when warnings about Covid 19 virus were rapidly spreading all over the world. Her mother, Marites, delivered her at the age of 46 and they live in a small room in Quezon City. Marites accepts laundry jobs to make a living, earning an estimated income of about $40 a month. However, when it is raining or there is a storm, nobody hires her. She depends on neighbors who give them leftover food. She also scavenges in trash bins on the streets for recycled items to augment her income.
In December 2020, when Ayarah was only ten months old, her father was taken to Cebu by his family due to a mental health condition. He was suffering from depression caused by the loss of his job due to the pandemic lockdown and stress from not being able to feed his family and support the medical care for Ayarah. Thus, Ayarah is now being raised by a single mom.
From the time Ayarah was born, she was already very sickly. If not cough and cold, it would be nausea, vomiting, and diarrhea. She would be sick for three weeks and will get well for a week, then will be sick again for three weeks to a month. It was a vicious cycle. Sometimes, she would wake up in the middle of the night catching her breath. She is a very hyperactive child and displays behavioral and emotional problems. When crying, she uncontrollably bangs her head on the wall and throws anything she can grab. When in public places, she would grab other kids’ toys & food, and frantically cries and throws herself on the ground when the toys & food are taken away from her.
In 2020, the year when Ayarah was born, hospitals were full of covid patients and did not accept other cases at all. So Ayarah was only being seen in family clinics for medication and antibiotics, but most of the time she was just treated at home by her mom for fear of contracting covid.
In June 2021, when covid cases were slowly going down, she was brought to National Children’s Hospital (NCH) for Pneumonia.
It was only in January 2023, at almost 3 years old when Ayarah was finally diagnosed by a Multi-Specialty Clinic with congenital heart disease. A 2D Echo test was ordered by the doctor but was not done due to a lack of money.
Sadly, in February 2023, a tumor was found in Ayarah’s perineal area which makes it difficult & painful for her to walk and move around. When in pain, she would relentlessly cry and angrily demonstrate tantrums and head banging until she exhausts herself and falls asleep.
She finally made it through at Philippine Children’s Medical Center (PCMC) where they have to stand in line as early as 3:00 am in order to be seen because the line is always long. They normally get done by 7:00 pm. The doctor has issued a series of procedures this month of May namely; 2D Echo, Chest X-ray, abdominal ultrasound, rehabilitation, and several blood tests. There are also referrals to specialists for dental services and Ophthalmology for her crossed eyes.