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Seventeen months ago our lives changed forever. On April 3, 2019 we lost our first born son Mateo. Our angel was 3 days from turning 7 months old and was perfectly healthy up until that week.
It all started Sunday afternoon with some diarrhea and Monday he spiked a temp of 101. We took him to see his doctor on Monday morning for urgent visit and Tuesday evening as a follow up. He had a low grade fever and diarrhea for 3 days, which was likely a stomach virus according to his pediatrician. His fever had improved by Tue and he was still active just not eating like he normally would. However he seemed to be having stomach pain on Wednesday morning so we decided to take him to the ER for a second opinion and because I didn't want to see my baby so uncomfortable. He wasn't crying but he would make little whimpers to tell me, "Mommy, I'm not feeling well".
We never expected to lose our son that day. He was not well but he was no where near deaths door. I have pictures of him the day before jumping in his favorite jumper watching his TV shows. Kids get sick all the time. This was his first time being sick and I was just a worried mom.
It all happened so fast. At 6:30AM we checked into the ER. He was transferred to the ICU by 9AM and died at 1130AM. Gone in less than 5 hours.
This was not suppose to happen. I saw the countless mistakes made that morning. As a registered nurse I watched but I couldn't help him. I didn't understand why he was dying from a common stomach flu.
It was like a domino effect. Mistake after mistake which lead to other complications and his eventual death. Our families rushed to be by his and our side. Both my parents were present when he took his last breathes. Our son should not have died that day!
Long story short there was medical negligence. To add salt to the deep wounds the hospital claims my son died because he had a very rare genetic disorder hemophagocytic lymphohistiocytic (HLH) and not because of their errors.
To be diagnosed with HLH a patient must have five out of eight criteria or have a genetic test done to look for specific gene mutations. My son only had two of the eight criteria, a ferritin level >500 and enlarged liver. As I have explained to the doctor and lawyers(which I shouldn't even have to do) the enlarge liver could be due to a number of causes but most likely due to sepsis. Which I believe is the primary cause of his death. Preventable but very deadly sepsis! The ferritin level alone can not be used to determine if he had HLH.
My son was never tested for HLH, however the hospitals provider continued to push this false claim. They said it was too expensive and was never done. I guess it was not worth the money to invest in a deceased patient.
We were left in a dark place with no answers. We were so scared for our future children. What if he really died of this rare genetic disorder and we passed it on again. We weren't prepared to deal with grief and still find the strength and courage to fight for a reason as to why he was no longer with us.
God and our son are the reasons we continue to fight for answers.
I felt strongly that he did not die of HLH, so my husband and I both paid out of pocket $$$$ to be tested for HLH and other genetic disorders. Both test were negative for ANY genetic disorders. After receiving our results the hospital claims that although rare it could have been acquired (due to non-genetic) form of HLH and not inherited.
Per our lawyers recommendation we waited to test Mateo's tissue which is being stored at the Harris County Institute of Forensic Sciences. Last week our lawyer informed us they would not be able to file a lawsuit against the hospital because their expert did not feel there is not enough evidence in the medical record to say they hastened his death. They basically didn't feel it was worth the effort because the hospital has many lawyers and lots of money to throw us into litigation for years. Basically it would not benefit the law firm. More than a year wasted for them to just give up. Well we are not giving up.
We are now 22 weeks pregnant with our second baby. Our OB suggested we speak to a genetic counselor about Mateo's sudden and unexpected passing. The genetic doctor has been so kind and patient with all of our questions and concerns. She heard our story and recommended we get Mateo tested ASAP. It will not only give us peace of mind for future children but will finally prove once and for all that Mateo did not die of HLH.
The only problem is the genetic testing for Mateo is not covered under our very pricey health insurance plan. The price for testing out of pocket is $7,000. I know with Covid and other hardships we have all faced this year many can not donate large amounts. All I ask is that you share this fundraiser or donate $5 or $10 to help Alex and I finally get the closure we deserve. We just want to finally prove his death was preventable so that the same mistakedoesn't happen to another family. We would ultimately have been okay if they just apologized instead of putting us through all this. I hope we can finally have answers with this test.
I am working with Baylor Genetics on a payment plan. At the very least to get the process started I need 20% down, which would be $1,400. With baby Amelia around the corner we are trying not to dip into our savings unless absolutely necessary. I am praying that people will find it in their hearts to donate. I usually try to do things on my own. I figure it out one way or another. But this past year I have learned that we weren't created to do it on our own. We are meant to help one another. I am asking for your help. Trust in God and he will provide. Thank you in advance to everyone who will take time to read this and donate or share. God bless you!
It all started Sunday afternoon with some diarrhea and Monday he spiked a temp of 101. We took him to see his doctor on Monday morning for urgent visit and Tuesday evening as a follow up. He had a low grade fever and diarrhea for 3 days, which was likely a stomach virus according to his pediatrician. His fever had improved by Tue and he was still active just not eating like he normally would. However he seemed to be having stomach pain on Wednesday morning so we decided to take him to the ER for a second opinion and because I didn't want to see my baby so uncomfortable. He wasn't crying but he would make little whimpers to tell me, "Mommy, I'm not feeling well".
We never expected to lose our son that day. He was not well but he was no where near deaths door. I have pictures of him the day before jumping in his favorite jumper watching his TV shows. Kids get sick all the time. This was his first time being sick and I was just a worried mom.
It all happened so fast. At 6:30AM we checked into the ER. He was transferred to the ICU by 9AM and died at 1130AM. Gone in less than 5 hours.
This was not suppose to happen. I saw the countless mistakes made that morning. As a registered nurse I watched but I couldn't help him. I didn't understand why he was dying from a common stomach flu.
It was like a domino effect. Mistake after mistake which lead to other complications and his eventual death. Our families rushed to be by his and our side. Both my parents were present when he took his last breathes. Our son should not have died that day!
Long story short there was medical negligence. To add salt to the deep wounds the hospital claims my son died because he had a very rare genetic disorder hemophagocytic lymphohistiocytic (HLH) and not because of their errors.
To be diagnosed with HLH a patient must have five out of eight criteria or have a genetic test done to look for specific gene mutations. My son only had two of the eight criteria, a ferritin level >500 and enlarged liver. As I have explained to the doctor and lawyers(which I shouldn't even have to do) the enlarge liver could be due to a number of causes but most likely due to sepsis. Which I believe is the primary cause of his death. Preventable but very deadly sepsis! The ferritin level alone can not be used to determine if he had HLH.
My son was never tested for HLH, however the hospitals provider continued to push this false claim. They said it was too expensive and was never done. I guess it was not worth the money to invest in a deceased patient.
We were left in a dark place with no answers. We were so scared for our future children. What if he really died of this rare genetic disorder and we passed it on again. We weren't prepared to deal with grief and still find the strength and courage to fight for a reason as to why he was no longer with us.
God and our son are the reasons we continue to fight for answers.
I felt strongly that he did not die of HLH, so my husband and I both paid out of pocket $$$$ to be tested for HLH and other genetic disorders. Both test were negative for ANY genetic disorders. After receiving our results the hospital claims that although rare it could have been acquired (due to non-genetic) form of HLH and not inherited.
Per our lawyers recommendation we waited to test Mateo's tissue which is being stored at the Harris County Institute of Forensic Sciences. Last week our lawyer informed us they would not be able to file a lawsuit against the hospital because their expert did not feel there is not enough evidence in the medical record to say they hastened his death. They basically didn't feel it was worth the effort because the hospital has many lawyers and lots of money to throw us into litigation for years. Basically it would not benefit the law firm. More than a year wasted for them to just give up. Well we are not giving up.
We are now 22 weeks pregnant with our second baby. Our OB suggested we speak to a genetic counselor about Mateo's sudden and unexpected passing. The genetic doctor has been so kind and patient with all of our questions and concerns. She heard our story and recommended we get Mateo tested ASAP. It will not only give us peace of mind for future children but will finally prove once and for all that Mateo did not die of HLH.
The only problem is the genetic testing for Mateo is not covered under our very pricey health insurance plan. The price for testing out of pocket is $7,000. I know with Covid and other hardships we have all faced this year many can not donate large amounts. All I ask is that you share this fundraiser or donate $5 or $10 to help Alex and I finally get the closure we deserve. We just want to finally prove his death was preventable so that the same mistakedoesn't happen to another family. We would ultimately have been okay if they just apologized instead of putting us through all this. I hope we can finally have answers with this test.
I am working with Baylor Genetics on a payment plan. At the very least to get the process started I need 20% down, which would be $1,400. With baby Amelia around the corner we are trying not to dip into our savings unless absolutely necessary. I am praying that people will find it in their hearts to donate. I usually try to do things on my own. I figure it out one way or another. But this past year I have learned that we weren't created to do it on our own. We are meant to help one another. I am asking for your help. Trust in God and he will provide. Thank you in advance to everyone who will take time to read this and donate or share. God bless you!