This story is part of the My #BornTooSoon Stories Blog Series, you can read the rest of the blogs here. It was originally published here.
Pablo Mendez and his wife Katherine were elated when she became pregnant with their first child. Like any first-time parents, they made a schedule of everything they would need to do to welcome the baby, including remodelling their house in Heredia City, Costa Rica.
However, in February 2020, at 25 weeks’ gestation, Katherine went into preterm labour and was taken into surgery, where their son Santiago was born.
Santiago in the NICU
“We had made sure to tick all the boxes. We had not missed any clinics, we had all the tests and scans done and they showed that our baby was doing well. Suddenly there was fear and uncertainty, and everything was just too complex for us to handle.”
Because of the uncertainty at the beginning of the COVID-19 pandemic, Pablo was not allowed into the operating theatre with his wife. Santiago was taken to the NICU. Visiting restrictions were put in place as the hospital tried to cope with COVID-19, and Pablo’s access to both his wife and his son was extremely limited.
“I was not allowed to see my son. Only mothers and women could enter the area, no men were allowed in. And when my wife got an infection post-surgery, I was only allowed to see Santiago for 15 minutes, and I was not allowed to touch him. I felt so powerless.”
Initially, doctors told Pablo that Santiago had blood on his brain that might cause some health issues. Weeks later, they learned he had cerebral paralysis. Katherine was able to hold her son when he was four weeks old. She provided skin-to-skin contact three times a day but could not breastfeed Santiago until his feeding tubes were removed two months later. Pablo’s first opportunity for physical contact with Santiago was six weeks after his birth.
“That happened by chance. The nurse was cleaning his incubator and she asked me to hold him while she did it. And you can imagine, Santiago was the size of my hand.”
Pablo and Katherine and their son Santiago
Santiago was discharged when he was 4 months old. He is unable to hold up his head or sit by himself. He is fed via a machine. He has also been diagnosed with West Syndrome: a severe infantile epileptic condition which causes seizures as well as cognitive and developmental impairments.
“He is still the sweetest boy. He is starting to enjoy therapy and is becoming more aware of his environment. He has a couple of gastrointestinal and renal surgeries scheduled, but for now we are just trying to enjoy every moment, every milestone he makes. Something as simple as him laughing means so much to us, and we celebrate each laugh.”
The change that Pablo would most like to see in the next decade is partnership between medical practitioners and patients. Sometimes they felt “foolish” when asking questions or not listened to by healthcare providers. They believe the partnership between themselves, all of the people in the hospitals, therapists, family and friends in caring for Santiago has been central to their progress.