Written by Venus Loreto
In 2011 and 2016 I lost two children who were both 2 days old. My baby boy who was born in 2011 had an onset of vomiting, fever, and seizures when I nursed him. We didn’t know what caused it so we took him to the hospital where he lasted only 3 hours before he lost his life. In 2012, I gave birth again. It was a baby girl. She is now a smart and healthy 8 year old.
Despite the past trauma we’ve had in the birth of our two male children, we still wanted to try to have a child again in 2020. We fervently prayed for a healthy boy.
On March 28, 2020 I gave birth to our son, Kevin Von Loreto Jr. We had a neonatalist/intensivist, Dr. Dean Dimaano, who took care of him. Upon birth, Kevin was admitted to MJ Santos Hospital for close monitoring. Through the 6th day, he presented grunting and snore-like sounds which we thought was normal, but were informed that he was having difficulty breathing. We were alarmed as they took blood samples to run tests that would indicate whether he was well enough to go home. He did not even cry when they drew blood from him. He was unresponsive; it was as if he was fast asleep. Dr. Dimaano was very concerned and called the head geneticist for consultation. My baby was given an initial diagnosis of a possible metabolic disorder. MJ Santos Hospital in Butuan City did not have the facilities/equipment needed to care for Kevin so we were referred to Davao Doctors Hospital, a larger hospital in Davao City. This hospital was an 8 hour drive from where we were. Additionally, we were in the middle of a COVID-19 lockdown.
On our way to Davao Doctors Hospital, my baby cried twice. We were so happy to hear him cry after being silent and asleep for 12 hours; this gave us hope.
When we arrived at Davao Doctors Hospital, our baby was under the care of a consultant specialist and neonatologist, Dr. Rommel Bernardo. On our baby’s first day in the pediatric ICU, his heart rate and oxygen levels were so low that they had to intubate him. We kept praying, “Lord, please give our baby a long life!” My husband and I both cried.
The geneticist placed a rush on the newborn screening Kevin needed. His results were negative from the newborn disorder screening. I then told the doctor of my history of our two infant boys’ death which prompted them to explore the possibility OTC deficiency. They tested the ammonia level in his blood and found that it was at extremely high at 1,340. They decided to perform peritoneal dialysis on our baby. He had already been in a coma for 4 days. We cried and asked the doctor if Kevin would awaken from the coma after dialysis. He informed us that he could not say for certain, but we should just hope for the best. Less than a week through dialysis, Kevin slowly began to open his eyes! We were so happy!
Our baby was mainly relying on the peritoneal dialysis for treatment because the medicine he needed (sodium benzoate and arginine) was still in the city of Manila. The medicine could not be transported immediately to the hospital in Davao as all commercial flights were grounded due to the lockdown. The medicine was eventually transported to the hospital via a C-130 aircraft.
One May 5, 2020, after one month in the hospital, our baby was discharged. We were thrilled! At the end of May 2020, Kevin was again admitted to MJ Santos in Butuan City due to severe diaper rash.
September 2020: Kevin was again admitted for aspiration pneumonia. He has cerebral palsy which affects the muscles for swallowing; a complication from his first crisis.
November 2020: Kevin was again admitted to Butuan Doctors Hospital for aspiration pneumonia and vomiting.
December 2020: we rushed our baby to Davao Doctors Hospital. He was admitted for hospital acquired pneumonia. His had high and low body temperatures, severe tremors, seizures, lethargy, and blood ammonia of 800+. He had to undergo peritoneal dialysis again and was confined to the hospital for one month before he was discharged.
May 2021: A sample was sent to California for Kevin’s DNA analysis. After 3 weeks, we received the results that confirmed that our baby had OTC deficiency.
August 2021: Our baby was admitted (to the hospital) because of vomiting and lethargy. The doctor was able to manage/stabilize his condition well, so he was discharged.
Currently, our baby is undergoing physical therapy and kept on a low protein diet. We take him for a blood ammonia check just once a month. The only place available in the island of Mindanao for the blood ammonia test is at Davao Doctors Hospital which is quite far from where we live.
Even with everything that has happened to our family and to Kevin Von, we are thankful to God. We are thankful that although we have no financial means, He continues to listen to our prayers and provides the means to enable us to somehow pay for and obtain treatment and materials for Kevin.
I want also to give acknowledgement in the story the 3 doctors who help my child survive: Dr. Rommel Bernardo, Dr. Dean Dimaano, and Dr. Conchita Abarquez. Thank You.
