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Our Baby Lived for 44 Days, But We'll Love Him Forever

Photo Credit: Jenelle Romo

Our little sweetheart, Mateo was born July 20, 2023. He was our fourth child.

Mateo had a long journey in the Cardiovascular Intensive Care Unit (CVICU) as he was diagnosed with Hypoplastic left heart syndrome (HLHS) and heterotaxy syndrome with polysplenia syndrome prior to being born.

After his first open heart surgery to put bands on to fix the blood flow with his lungs and heart, he developed an E.Coli infection. It is believed that our sweet baby boy had Necrotizing Enterocolitis (NEC), and with a weak immune system and leaky gut, he had a difficult time fighting this infection.

He was placed on extracorporeal membrane oxygenation (ECMO, a heart and lung life support machine) and a Continuous renal replacement therapy (CRRT, a kidney support machine), so he had a lot of machines to help support him.

The goal was to put him on these machines so he could just focus on healing from the infection. He was given a lot of fluid to help him through the infection. At his worst, Mateo’s flow from the ECMO was at 700. I was told very sick babies are close to 400, maybe 500. Being at 700 showed me the severity of my son’s condition.

Mateo was 2-3 times the size he was just a few days before. Due to the fluid overload his skin started to have lesions. Plastic surgery came in to discuss how to help him in the future. Doctors continued to put betadine on his wounds. And as time went on, his dead skin began to pull away from his healthy skin.

Doctors needed Mateo to allow them to remove fluid. We were told there was 24-36 hour timeframe in which they would be able to pull fluid from him, or there would be nothing else they could do for him.

We prayed over our son, and so many others were praying for him too.

The next day, fluid was pulled from him and he began his road to recovery. He pulled through the first time with the infection and was taken off antibiotics. It was believed to have been enough time on antibiotics and the ultrasound of his gut looked clear.

I told Infectious Disease that I had a bad feeling about taking him off the antibiotics. He was about to come off ECMO and was on a flow between 50-100. It truly was a miracle that he was coming off ECMO.

His road would be far from over, but he was making great progress.

The recommendation was followed, and Mateo was taken off antibiotics, after having been on them for 18 days. That happened on a Friday and we began to ease Mateo off ECMO on Sunday.

His doctor noticed he had a fever and antibiotics were started back up right away since they were unsure why he had a fever.

It turned out, the E.Coli infection was back, which meant it had hidden somewhere in his system. This time it came back with a vengeance. It had now gone through our sweet Mateo’s brain barrier and was giving him seizures and brain damage. His brain had so much damage that our precious boy would no longer talk, eat on his own, or walk.

He was on six seizure medications, which weren’t working.

The Head of Neurology doctor told me that she couldn’t believe they couldn’t get his seizures under control with the amount of medicine they were giving him. The infection continued to cause enormous damage to our baby boy's little body.

Our little sweetheart went to Heaven on September 1, 2023. He blessed our family for 44 days. He was a true warrior and endured so much in his short life. Our family gave him unconditional love by reading to him, holding his hands, talking to him, and spending time with him. Our sweet Mateo only knew love. He left behind three incredible siblings who miss him dearly.

Thank you Jenelle Romo for sharing your story. Shared with permission.

Pregnancy and infant loss can leave grieving parents feeling isolated and unsure how to navigate the heartbreaking circumstance of living without their precious baby. Unexpecting delicately helps grieving parents navigate the complexities and heartache of life after loss.

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