Mom has normal second pregnancy, then at 39 weeks everything changed

Following a straightforward and completely normal pregnancy, Rebecca Santos was preparing to deliver a healthy baby boy—only for a scan at 39 weeks to change everything.

Throughout her second pregnancy, Santos, 31, from Pennsylvania, told Newsweek that it was incredibly easy and she felt “very healthy.” At 39 weeks, she was due to attend an appointment and noticed that her baby was not moving quite so much, so she decided to mention that to the midwife just in case.

As a result, a non-stress test (NST) was conducted to monitor the baby’s heart rate and movements. While his movements were deemed sufficient, his heart rate lacked the variability expected of a full-term baby.

“Due to the results of the NST, my midwife sent me to Labor and Delivery for further evaluation,” Santos said. “It was a few hours later when I was told I would need to be induced.”

After being induced on July 22, Santos was rushed for a cesarean in the early hours of the following morning. When her son Jordi was born, he did not cry and Santos only knew he was delivered because an assisting doctor commented on how cute he was.

“They worked on him for a few minutes before allowing my husband to see him. I only saw a brief glimpse of Jordi as the team rushed him away. After I had been stitched up, I was told they suspected Jordi was in some sort of neurological distress based on his condition,” Santos said.

Santos was not able to see her newborn son for several hours after his birth. She was not allowed to leave her hospital room until she could stand independently, so she had to meet Jordi over FaceTime.

It broke her heart to see her second born son attached to so many machines and tubes. Meanwhile, it felt like “a living hell” to be on the maternity ward with so many new moms and their babies, who were going home to start a new chapter.

“It was like being stuck in a time loop of the worst moment of your life,” she said.

Reaching a Diagnosis

Jordi had to undergo multiple tests and scans within the first few days of his life. Everything from his blood, reflexes, tone and bodily functions were monitored.

When he was 1-week-old, an MRI scan revealed the devastating diagnosis that Santos had been dreading. He was diagnosed with Hypoxic-Ischemic Encephalopathy (HIE), a brain injury caused by lack of oxygen and blood flow to the brain.

“Even though I knew from my research to expect the diagnosis of HIE, nothing could have prepared me for the moment we were told the damage to his brain was severe,” Santos told Newsweek.

Doctors told Santos that Jordi would be profoundly disabled and the prognosis was to just “wait and see.” That, of course, was not sufficient for Santos, who did everything to advocate for Jordi.

Due to HIE, Jordi also has cerebral palsy, microcephaly, cerebral visual impairment. He had to be placed on breathing support in the hospital, he is G-tube dependent and required a strict regimen of respiratory treatments. This meant someone had to be near him at all times because he would regularly cough and choke, even in his sleep.

Now, at 11 months old, Jordi’s development is severely delayed but he is making progress that was previously considered improbable. He has experienced countless hospitalizations from illnesses and complications, significantly impacting his development. He continues to receive a multitude of therapies and has recently undergone stem cell treatment in Mexico.

While the past year has been more challenging than Santos ever imagined, she is so grateful to see how far Jordi has come.

She said: “Nothing was ever guaranteed for Jordi, we didn’t know if he would ever interact, move or feel joy. But Jordi is nothing but smiles now. He is light, love and all things that are good in this world.”

Raising Awareness for HIE

There were times when Santos felt incredibly alone, and a lot of the research relating to HIE was outdated, so it did not feel entirely relevant to Jordi’s situation. This inspired her to start documenting her family’s experience on social media (@jordi.the.hiero on TikTok and @jordithehiero on Instagram).

Although HIE may be complex and difficult to endure, Santos hopes to provide other families with hope and to raise awareness for a condition that so few people have heard of.

“To those who are fortunate enough to not relate to our situation, please remember that everyone deserves to be treated with kindness and respect,” Santos said. “No one chooses this life. I never imagined something like this could happen to me, but it did.

“To those who understand our struggles, I am sorry you are walking this path, but you are not alone. You and your family deserve to take up the same space as everyone else. Be proud of what you are and everything you have had to become.”

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Contact Newsweek editors on this story: Charlotte Nisbet and Emma Lee-Sang