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#BereavedMothersOfTheNicu: Celebrating the life of Santiago

Author: Michelle Zavalza, bereaved mother of Santiago Zalvalza



My pregnancy was high risk from the start. At 26 weeks, my water ended up breaking and I was quickly hospitalized with a plan to keep me pregnant until I reached 34 weeks. So, they gave me magnesium to stop my contractions along with IV fluids and injected me with steroid shots as I spent 2 weeks in the hospital on strict bed rest. Little Santiago began to experience high heart rates in the womb, so they put me on oxygen which helped lower his heart rate. When I reached 29 weeks exactly, I went into active labor again only this time they couldn’t find anything to stop my contractions. I didn’t experience high blood pressure or anything preeclampsia related so they couldn't figure out what could have caused me to go into preterm labor. But whatever the reason, Santiago was on his w


Our NICU experience was pretty eventful and stressful, especially because I was a single teen mom going through this journey on my own. Santiago spent 100 days in the NICU during which we discovered his CHD, a diaphragmatic hernia, and cleft palate that was never detected in my ultrasounds. Santiago developed 2 serious heart infections, had 2 hospital transfers, numerous tests, 2 MRI’s and a g-tube placement due to poor feeding by mouth as a result of poor suction due to his cleft palate. Further into our journey we discovered that Santiago had an atrial septal defect (congenital heart disease), dysplastic corpus callosum, hydronephrosis, chronic lung disease and a rare syndrome known as kabuki syndrome that affects 1 in 32,000 individuals. While hearing all of these diagnoses I remember thinking “When will the diagnosis stop?”  I always worried if Santiago would be able to lead a life like most babies, but I always knew, prepared, and reminded myself that he was a micropreemie who would go through things at his own pace--and he did!  I remember wondering if I would ever see him roll over as it was something we struggled with in PT for months. And then it happened! He rolled from his stomach to back and then he rolled from back to stomach. It was such an amazing moment that I love to talk about because it was such a big moment for me.



When I got the devastating news that little Santiago had hepatoblastoma (a rare type of liver cancer), I think I felt worse than when the doctors told me he was going to be very premature and possibly have a low chance of surviving (considering how small he was for a 29 weeker).Within a week doctors ran all the tests possible-- 2 upper GI’s, 2 CT scans, MRI’s, multiple X-rays and so many blood cultures. On October 2, 2019 Santiago went in to what was supposed to be a harmless biopsy of his tumor. But after several hours of fighting in surgery, little Santiago gained his little wings during surgery. When the surgeons came out to tell me he didn't make it, it all just hit me like a literal train and my whole world literally stopped. I had to throw up, cry and scream all at once and best believe it happened just like that. It literally felt like those scenes in the movies because I couldn’t hear anything, my ears were ringing and people were talking but I couldn't hear them because I was in complete shock. All I could do was cry thinking “How could this be? My baby, my best friend is gone?” And I was also thinking “this was the last thing he needed. He was such a fighter and he didn't deserve this”. Unfortunately, the mass was much more aggressive than expected and wouldn't stop bleeding during his biopsy. The first few days and weeks without him were extremely hard. I didn't eat for a whole week and all I did was cry. One of the hardest parts of this experience was having to go pick out his funeral stuff. Even as the months have gone on, it’s still been very hard but I'm slowly coping. I went from crying every day, to every week, to every now and then. I still grieve hard and it’s still there all the time. But I manage to find different things to keep me from going and one of those things happens to be talking about our journey. 


I can be honest and admit that I feel scared as Mother’s Day is approaching.  I’m scared to see how I’ll cope emotionally and mentally waking up that day. But I will also feel happy knowing that although he is in Heaven, healed and thriving, I'm still his momma down here on Earth and always will be. I’m forever proud and grateful that he gave me the opportunity to experience what it was like to not only be a mommy to him but to experience happiness and love as he taught me so much. I didn’t know there was a Bereaved Mother’s Day and I do feel like it’s needed because it gives all moms who have experienced child loss or loss in general a day to honor their children. We honor them every day, but I feel like this day will be extra special ESPECIALLY knowing that we can speak out on loss and share things about it. Since the day Santiago was born, each day was a struggle and a fight to live through. Santiago was born a fighter and fought to the very end. I will forever be proud of my angel as we really went through a lot. He showed me so much as a new, young mother, and I learned things that teens my age wouldn’t know. We made so many amazing memories together that I’ll always cherish. I will never hesitate to share his story because I feel like people need to hear what an amazing fighter Santiago was from the day he was born. Santiago made an impact on so many lives through his journey through prematurity and childhood cancer and I will continue to advocate and share on his behalf.


Andsheshallreign.com honors the life and legacy of Santiago Zavalza and the strength of his mother Michelle. You can follow Santiago's journey on Earth and follow Michelle's advocacy efforts on Instagram by following @onelittlemicro.

To learn more about Kabuki Syndrome click here https://rarediseases.org/rare-diseases/kabuki-syndrome/. And to learn more about hepatoblastomas, click here https://www.chop.edu/conditions-diseases/hepatoblastoma-liver-cancer.




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