This is my first cousin once removed who was born with a congenital heart defect. Matteo is the first born to Karen and Michael Tauriello. Since the passing my cousin and her husband and both families have donated to the Heart Foundation. My cousin founded Matteo's wings and has walked to raise money for the Children's Heart Foundation in New York as well. This story is from my cousin.
Matteo's story:
A few days after Christmas in 2010, we learned that we were expecting our first child. This was a surprise, but we couldn't be happier! During a routine test early in the pregnancy, my doctor noticed a problem. He was unsure of exactly what it was, but he knew something wasn't right. It was at my 18 week "early anatomy" ultrasound appointment that my ...son's CHD was confirmed. We were devastated. We sat with a pediatric cardiologist who explained in great detail what she thought was wrong with his heart, and what kind of surgeries he would need and what kind of care he would require. She gave us hope...a good prognosis with open heart surgery. She also discussed the option of termination multiple times during the pregnancy. We knew this was not an option for us. We were already in love with this little angel growing inside me. We wanted to give him the best possible chance, so we transferred obstetric care to some of the top physicians in the country at NYP Morgan Stanley Children's Hospital. The remainder of the pregnancy was tough. Countless hours spent traveling back and forth to Manhattan from Suffolk County in Long Island, and countless more hours on my back and side in a dark-lit room during the fetal echocardiograms. His diagnosis changed a few times during the pregnancy as his heart grew larger, and they could visualize it more clearly. From what started as transposition of the great arteries (TGA) to his final diagnosis of double outlet right ventricle (DORV) with a sub-pulmonic ventricular septal defect (VSD.) On July 18, 2011, Matteo Xavier was born. He was a beautiful baby. They showed him to us quickly and then whisked him away to the transitional nursery for evaluation. He wasn't a "blue baby" as they told us he'd be, and he didn't need an immediate shunt procedure as they predicted he'd need! He surprised everyone left and right with how well he was doing. We were overjoyed and so proud of our first born son. Four days later, when I was being discharged, we got the wonderful news that he was being discharged from the cardiac NICU as well! We were going home together...as a family!
The first few weeks home with him were the same as with any other newborn...exhausting! We enjoyed every minute of it though; we loved being parents. We were both head-over-heels in love with this sweet baby boy. As the weeks went on, we took him to his pediatrician and pediatric cardiologist often. Each visit to the cardiologist showed his blood oxygen level diminishing, until finally the doctor told us it was time to intervene. He was 6 1/2 weeks old. We packed our bags and headed back to MSCHONY to have the very prominent pediatric cardiac surgeon, Dr. Emile Bacha fix his broken heart. As the OR team took him from my arms, we were terrified. I am an operating room nurse, and my husband, Mike, is a surgical PA - we know the O.R., but it's different when they're taking your child. The next 9 hours were the longest of our lives. When the surgeon finally came to the waiting area to tell us how he did, it was so scary. He explained that Matteo's heart was a lot sicker than they thought, and that he had to be placed on ECMO (a heart-lung machine for life support) three times during the operation. He noted that Matteo had a markedly hypoplastic left heart. He told us the next twenty-four hours would be critical but he was "cautiously optimistic." Matteo did well after the surgery. Mike and I spent every waking moment at his bedside. We even slept in his room with him, each and every night of his recovery. Matteo continued to improve daily. He was weaned from medications, had two of his four chest tubes removed, was weaned from the ventilator, and on the eleventh day (Sept. 11th) Matteo was weaned from CPAP and was breathing on his own! Mommy and Daddy got to hold him in our arms for the first time in ten days! It was such a tender moment, to have him back in our arms where he belonged. He wrapped his little hand around daddy's finger and I melted. I'll never forget when he stuck out his little tongue at the very same moment I went in for a kiss!
That night, around midnight, he slowly became lethargic, and his oxygen level began to drop. It became clear that he would need to be put back on the ventilator. We were disappointed, but thought, "It's okay, he isn't ready…he just needs a little more time." More and more people came into the room, and along with them came the "crash cart." It became apparent that this was more serious than just the need to be put back on the vent. He was decompensating - his condition was rapidly declining. Mike and I were gently asked to leave the room and wait in the waiting area while they took care of our son. We then received periodic updates from the waiting room, each of which was worse than than the one that preceded it, until the final update that began with, "I'm so sorry…" Matteo's heart stopped beating at 2:55 a.m. on September 12, 2011. Matteo got his wings that day; he was called home to God's kingdom. We know that our family will be reunited in heaven. We are also positive that Matteo prays for his parents and his new baby brother, Gabriel. Recently, the team "Matteo's Wings" was formed in his memory and will continue to actively fundraise for The Children's Heart Foundation. We believe that their dedication to funding research for prevention, diagnosis, and treatment is second to none. We hope that by doing so, we can spare other families the heartache of welcoming a child into the world, and then having to say goodbye too soon.
Matteo's story:
A few days after Christmas in 2010, we learned that we were expecting our first child. This was a surprise, but we couldn't be happier! During a routine test early in the pregnancy, my doctor noticed a problem. He was unsure of exactly what it was, but he knew something wasn't right. It was at my 18 week "early anatomy" ultrasound appointment that my ...son's CHD was confirmed. We were devastated. We sat with a pediatric cardiologist who explained in great detail what she thought was wrong with his heart, and what kind of surgeries he would need and what kind of care he would require. She gave us hope...a good prognosis with open heart surgery. She also discussed the option of termination multiple times during the pregnancy. We knew this was not an option for us. We were already in love with this little angel growing inside me. We wanted to give him the best possible chance, so we transferred obstetric care to some of the top physicians in the country at NYP Morgan Stanley Children's Hospital. The remainder of the pregnancy was tough. Countless hours spent traveling back and forth to Manhattan from Suffolk County in Long Island, and countless more hours on my back and side in a dark-lit room during the fetal echocardiograms. His diagnosis changed a few times during the pregnancy as his heart grew larger, and they could visualize it more clearly. From what started as transposition of the great arteries (TGA) to his final diagnosis of double outlet right ventricle (DORV) with a sub-pulmonic ventricular septal defect (VSD.) On July 18, 2011, Matteo Xavier was born. He was a beautiful baby. They showed him to us quickly and then whisked him away to the transitional nursery for evaluation. He wasn't a "blue baby" as they told us he'd be, and he didn't need an immediate shunt procedure as they predicted he'd need! He surprised everyone left and right with how well he was doing. We were overjoyed and so proud of our first born son. Four days later, when I was being discharged, we got the wonderful news that he was being discharged from the cardiac NICU as well! We were going home together...as a family!
The first few weeks home with him were the same as with any other newborn...exhausting! We enjoyed every minute of it though; we loved being parents. We were both head-over-heels in love with this sweet baby boy. As the weeks went on, we took him to his pediatrician and pediatric cardiologist often. Each visit to the cardiologist showed his blood oxygen level diminishing, until finally the doctor told us it was time to intervene. He was 6 1/2 weeks old. We packed our bags and headed back to MSCHONY to have the very prominent pediatric cardiac surgeon, Dr. Emile Bacha fix his broken heart. As the OR team took him from my arms, we were terrified. I am an operating room nurse, and my husband, Mike, is a surgical PA - we know the O.R., but it's different when they're taking your child. The next 9 hours were the longest of our lives. When the surgeon finally came to the waiting area to tell us how he did, it was so scary. He explained that Matteo's heart was a lot sicker than they thought, and that he had to be placed on ECMO (a heart-lung machine for life support) three times during the operation. He noted that Matteo had a markedly hypoplastic left heart. He told us the next twenty-four hours would be critical but he was "cautiously optimistic." Matteo did well after the surgery. Mike and I spent every waking moment at his bedside. We even slept in his room with him, each and every night of his recovery. Matteo continued to improve daily. He was weaned from medications, had two of his four chest tubes removed, was weaned from the ventilator, and on the eleventh day (Sept. 11th) Matteo was weaned from CPAP and was breathing on his own! Mommy and Daddy got to hold him in our arms for the first time in ten days! It was such a tender moment, to have him back in our arms where he belonged. He wrapped his little hand around daddy's finger and I melted. I'll never forget when he stuck out his little tongue at the very same moment I went in for a kiss!
That night, around midnight, he slowly became lethargic, and his oxygen level began to drop. It became clear that he would need to be put back on the ventilator. We were disappointed, but thought, "It's okay, he isn't ready…he just needs a little more time." More and more people came into the room, and along with them came the "crash cart." It became apparent that this was more serious than just the need to be put back on the vent. He was decompensating - his condition was rapidly declining. Mike and I were gently asked to leave the room and wait in the waiting area while they took care of our son. We then received periodic updates from the waiting room, each of which was worse than than the one that preceded it, until the final update that began with, "I'm so sorry…" Matteo's heart stopped beating at 2:55 a.m. on September 12, 2011. Matteo got his wings that day; he was called home to God's kingdom. We know that our family will be reunited in heaven. We are also positive that Matteo prays for his parents and his new baby brother, Gabriel. Recently, the team "Matteo's Wings" was formed in his memory and will continue to actively fundraise for The Children's Heart Foundation. We believe that their dedication to funding research for prevention, diagnosis, and treatment is second to none. We hope that by doing so, we can spare other families the heartache of welcoming a child into the world, and then having to say goodbye too soon.
This is my first cousin once removed who was born with a congenital heart defect. Matteo is the first born to Karen and Michael Tauriello. Since the passing my cousin and her husband and both families have donated to the Heart Foundation. My cousin founded Matteo's wings and has walked to raise money for the Children's Heart Foundation in New York as well. This story is from my cousin.
Matteo's story:
A few days after Christmas in 2010, we learned that we were expecting our first child. This was a surprise, but we couldn't be happier! During a routine test early in the pregnancy, my doctor noticed a problem. He was unsure of exactly what it was, but he knew something wasn't right. It was at my 18 week "early anatomy" ultrasound appointment that my ...son's CHD was confirmed. We were devastated. We sat with a pediatric cardiologist who explained in great detail what she thought was wrong with his heart, and what kind of surgeries he would need and what kind of care he would require. She gave us hope...a good prognosis with open heart surgery. She also discussed the option of termination multiple times during the pregnancy. We knew this was not an option for us. We were already in love with this little angel growing inside me. We wanted to give him the best possible chance, so we transferred obstetric care to some of the top physicians in the country at NYP Morgan Stanley Children's Hospital. The remainder of the pregnancy was tough. Countless hours spent traveling back and forth to Manhattan from Suffolk County in Long Island, and countless more hours on my back and side in a dark-lit room during the fetal echocardiograms. His diagnosis changed a few times during the pregnancy as his heart grew larger, and they could visualize it more clearly. From what started as transposition of the great arteries (TGA) to his final diagnosis of double outlet right ventricle (DORV) with a sub-pulmonic ventricular septal defect (VSD.) On July 18, 2011, Matteo Xavier was born. He was a beautiful baby. They showed him to us quickly and then whisked him away to the transitional nursery for evaluation. He wasn't a "blue baby" as they told us he'd be, and he didn't need an immediate shunt procedure as they predicted he'd need! He surprised everyone left and right with how well he was doing. We were overjoyed and so proud of our first born son. Four days later, when I was being discharged, we got the wonderful news that he was being discharged from the cardiac NICU as well! We were going home together...as a family!
The first few weeks home with him were the same as with any other newborn...exhausting! We enjoyed every minute of it though; we loved being parents. We were both head-over-heels in love with this sweet baby boy. As the weeks went on, we took him to his pediatrician and pediatric cardiologist often. Each visit to the cardiologist showed his blood oxygen level diminishing, until finally the doctor told us it was time to intervene. He was 6 1/2 weeks old. We packed our bags and headed back to MSCHONY to have the very prominent pediatric cardiac surgeon, Dr. Emile Bacha fix his broken heart. As the OR team took him from my arms, we were terrified. I am an operating room nurse, and my husband, Mike, is a surgical PA - we know the O.R., but it's different when they're taking your child. The next 9 hours were the longest of our lives. When the surgeon finally came to the waiting area to tell us how he did, it was so scary. He explained that Matteo's heart was a lot sicker than they thought, and that he had to be placed on ECMO (a heart-lung machine for life support) three times during the operation. He noted that Matteo had a markedly hypoplastic left heart. He told us the next twenty-four hours would be critical but he was "cautiously optimistic." Matteo did well after the surgery. Mike and I spent every waking moment at his bedside. We even slept in his room with him, each and every night of his recovery. Matteo continued to improve daily. He was weaned from medications, had two of his four chest tubes removed, was weaned from the ventilator, and on the eleventh day (Sept. 11th) Matteo was weaned from CPAP and was breathing on his own! Mommy and Daddy got to hold him in our arms for the first time in ten days! It was such a tender moment, to have him back in our arms where he belonged. He wrapped his little hand around daddy's finger and I melted. I'll never forget when he stuck out his little tongue at the very same moment I went in for a kiss!
That night, around midnight, he slowly became lethargic, and his oxygen level began to drop. It became clear that he would need to be put back on the ventilator. We were disappointed, but thought, "It's okay, he isn't ready…he just needs a little more time." More and more people came into the room, and along with them came the "crash cart." It became apparent that this was more serious than just the need to be put back on the vent. He was decompensating - his condition was rapidly declining. Mike and I were gently asked to leave the room and wait in the waiting area while they took care of our son. We then received periodic updates from the waiting room, each of which was worse than than the one that preceded it, until the final update that began with, "I'm so sorry…" Matteo's heart stopped beating at 2:55 a.m. on September 12, 2011. Matteo got his wings that day; he was called home to God's kingdom. We know that our family will be reunited in heaven. We are also positive that Matteo prays for his parents and his new baby brother, Gabriel. Recently, the team "Matteo's Wings" was formed in his memory and will continue to actively fundraise for The Children's Heart Foundation. We believe that their dedication to funding research for prevention, diagnosis, and treatment is second to none. We hope that by doing so, we can spare other families the heartache of welcoming a child into the world, and then having to say goodbye too soon.
Matteo's story:
A few days after Christmas in 2010, we learned that we were expecting our first child. This was a surprise, but we couldn't be happier! During a routine test early in the pregnancy, my doctor noticed a problem. He was unsure of exactly what it was, but he knew something wasn't right. It was at my 18 week "early anatomy" ultrasound appointment that my ...son's CHD was confirmed. We were devastated. We sat with a pediatric cardiologist who explained in great detail what she thought was wrong with his heart, and what kind of surgeries he would need and what kind of care he would require. She gave us hope...a good prognosis with open heart surgery. She also discussed the option of termination multiple times during the pregnancy. We knew this was not an option for us. We were already in love with this little angel growing inside me. We wanted to give him the best possible chance, so we transferred obstetric care to some of the top physicians in the country at NYP Morgan Stanley Children's Hospital. The remainder of the pregnancy was tough. Countless hours spent traveling back and forth to Manhattan from Suffolk County in Long Island, and countless more hours on my back and side in a dark-lit room during the fetal echocardiograms. His diagnosis changed a few times during the pregnancy as his heart grew larger, and they could visualize it more clearly. From what started as transposition of the great arteries (TGA) to his final diagnosis of double outlet right ventricle (DORV) with a sub-pulmonic ventricular septal defect (VSD.) On July 18, 2011, Matteo Xavier was born. He was a beautiful baby. They showed him to us quickly and then whisked him away to the transitional nursery for evaluation. He wasn't a "blue baby" as they told us he'd be, and he didn't need an immediate shunt procedure as they predicted he'd need! He surprised everyone left and right with how well he was doing. We were overjoyed and so proud of our first born son. Four days later, when I was being discharged, we got the wonderful news that he was being discharged from the cardiac NICU as well! We were going home together...as a family!
The first few weeks home with him were the same as with any other newborn...exhausting! We enjoyed every minute of it though; we loved being parents. We were both head-over-heels in love with this sweet baby boy. As the weeks went on, we took him to his pediatrician and pediatric cardiologist often. Each visit to the cardiologist showed his blood oxygen level diminishing, until finally the doctor told us it was time to intervene. He was 6 1/2 weeks old. We packed our bags and headed back to MSCHONY to have the very prominent pediatric cardiac surgeon, Dr. Emile Bacha fix his broken heart. As the OR team took him from my arms, we were terrified. I am an operating room nurse, and my husband, Mike, is a surgical PA - we know the O.R., but it's different when they're taking your child. The next 9 hours were the longest of our lives. When the surgeon finally came to the waiting area to tell us how he did, it was so scary. He explained that Matteo's heart was a lot sicker than they thought, and that he had to be placed on ECMO (a heart-lung machine for life support) three times during the operation. He noted that Matteo had a markedly hypoplastic left heart. He told us the next twenty-four hours would be critical but he was "cautiously optimistic." Matteo did well after the surgery. Mike and I spent every waking moment at his bedside. We even slept in his room with him, each and every night of his recovery. Matteo continued to improve daily. He was weaned from medications, had two of his four chest tubes removed, was weaned from the ventilator, and on the eleventh day (Sept. 11th) Matteo was weaned from CPAP and was breathing on his own! Mommy and Daddy got to hold him in our arms for the first time in ten days! It was such a tender moment, to have him back in our arms where he belonged. He wrapped his little hand around daddy's finger and I melted. I'll never forget when he stuck out his little tongue at the very same moment I went in for a kiss!
That night, around midnight, he slowly became lethargic, and his oxygen level began to drop. It became clear that he would need to be put back on the ventilator. We were disappointed, but thought, "It's okay, he isn't ready…he just needs a little more time." More and more people came into the room, and along with them came the "crash cart." It became apparent that this was more serious than just the need to be put back on the vent. He was decompensating - his condition was rapidly declining. Mike and I were gently asked to leave the room and wait in the waiting area while they took care of our son. We then received periodic updates from the waiting room, each of which was worse than than the one that preceded it, until the final update that began with, "I'm so sorry…" Matteo's heart stopped beating at 2:55 a.m. on September 12, 2011. Matteo got his wings that day; he was called home to God's kingdom. We know that our family will be reunited in heaven. We are also positive that Matteo prays for his parents and his new baby brother, Gabriel. Recently, the team "Matteo's Wings" was formed in his memory and will continue to actively fundraise for The Children's Heart Foundation. We believe that their dedication to funding research for prevention, diagnosis, and treatment is second to none. We hope that by doing so, we can spare other families the heartache of welcoming a child into the world, and then having to say goodbye too soon.
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