Fight with Aiden Mathis & Family
Donation protected
My name is Nikia Dyson and I am a married mother of (5) beautiful children. I share our story coming from a place of vulnerability and transparency that is quite difficult to share. Our story starts back in 2016 where during our routine 20/21 week ultrasound, it was determined that our son, Aiden Dyson (Meaning Little Fiery Gift From God), would be born with a life threatening birth defect called CDH (Congenital Diaphragmatic Hernia). In addition to CDH, Aiden was also diagnosed with BPS or Pulmonary Sequestration (Bronchopulmonary Sequestration) .
Following Aiden’s birth his health began to deteriorate quickly. Imagine that all your research on CDH and conversations with other parents makes it clear, that it is vital that you deliver in an ECMO facility (a hospital that offers ECMO as a source of lung/heart support). Imagine that all your research states that 50% of all babies born with CDH need ECMO treatment. As a parent, your first desire is to help and protect your child anyway possible, so your natural instinct would be to make sure that you are delivering in a facility that is fully equipped to deliver and care for your sick baby and give him a fighting chance. Imagine that when your sick baby codes (v Fib) in the hospital, requires resuscitation, his body will not respond to any medications, ventilation or other forms of life support, his organs are shutting down and he needs emergency ECMO. The physician expresses that he needs ECMO, with relief you say, “Great, you have it,”….because you research this, you spoke to all the members of your team and you even saw it listed on the hospital site, but the physician looks at you and says, “No, we have it for our heart patients, not our lung patients.” Your heart drops and your world stops, what….have…. you…. done?
CDH comes with a life long journey, fear, uncertainty, and the possibility of reherniating at any time. As time goes on, Aiden’s biggest obstacle is a result of the traumatic brain injury (Hypoxic Ischemic Encephalopathy-HIE) he suffered after coding and needed ECMO support. After he coded, their attempts to resuscitate him with other ventilation sources and life-support were unsuccessful, so they resorted to manual ventilation (hand-bagging) which extended over the course of a 12-hr time period where he did not receive proper oxygenation to his brain and other organs. This time spanned from the time he coded, Sunrise making the decision to transport him, until the life-flight team from UT at Primary Children’s Hospital transported him to their NICU in Salt Lake City and performed an emergency crash surgery to place him on ECMO.
Due to Aiden’s Hypoxic Brain Injury among multiple other complications, he spent nearly three months in the NICU. Aiden is home now, but our lives are very different. Aiden has been diagnosed with spastic quadriplegia cerebral palsy and cortical visual impairment as a result of his brain injury. Our days are quite filled consisting of outpatient private therapies with speech, feeding, occupational and physical, home therapy with occupational, vision services and assistive technologies (learning to use communication devices) , weekly checks with his local pediatrician and lung specialist, and we travel to Salt Lake City, UT to Primary Children’s Hospital every six months for checkups with his specialist care team (which include neurology, cardiology, nephrology, pulmonology, gastroenterology, ophthalmology, audiology, comprehensive care, and with his surgeon & dietician). During our most recent visit this week (Nov. 26-30, 2018), it was discovered via chest x-ray and an Upper GI that Aiden has in fact reherniated, and will likely require another surgery in the future to correct his hiatal hernia and paraesophageal hernia. Aiden care is quite extensive and we have only just started. Due to Aiden’s physical limitations, he has a gait trainer and stander to assist him, but now we are looking at wheelchairs and special needs adaptive strollers, additional equipment to help him day-to-day, extensive therapies out of state, possible stem cell treatment and SDR surgery, which all is not covered by insurance and upwards of $80,000-100,000. In addition to these expenses, we are looking for a home to accommodate Aiden’s needs with the use of his equipment (gait trainer, wheelchair, and creating a specialized space for his home therapies, etc.).
I truly do believe that all of this is for a reason, but we are in need of help right now and I am praying that an angel investor/donor or someone with just a good heart has a desire to help a special needs family/family facing a financial hardship. Between all the changes we’ve had financially, income change, Aiden’s care and everything that goes along with it, we are at risk of losing it all and need a substantial amount to stay afloat. I don’t understand this season I am in right now, but I have continued to stand firm through prayer & fasting believing for clarity and direction through it all. We are facing so much in every aspect of our lives and we just continue to get blow after blow. We need help, a lifeline, a miracle and we need it now. I am holding on, but my God it has been so hard. If our story touches you and you find it in your heart to give or even share our story, just know that it is appreciated and will be a blessing beyond what you could ever imagine. Love & Blessings~Kia
We have openly shared Aiden’s story since he was diagnosed in utero….you can read his story here and learn about our amazing little man: https://www.facebook.com/LoveHopeFaith4Aiden/ or on Instagram at LoveHopeFaith4Aiden
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Background/Medical Terms:
CDH (Congenital Diaphragmatic Hernia): Occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The wide, flat muscle that separates the chest and abdominal cavities is called the diaphragm. The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen. The majority of CDHs occur on the left side. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected. The result of this is called pulmonary hypoplasia. While in the uterus, a fetus does not need its lungs to breathe, because the placenta performs this function. However, if the lungs are too small after the baby is born, the baby will not be able to provide itself with enough oxygen to survive.
BPS or Pulmonary Sequestration (Bronchopulmonary Sequestration): A pulmonary sequestration is a cystic piece of abnormal lung tissue that does not work like normal lung tissue. They usually appear next to the lung (extrapulmonary, aka extralobar sequestration) or within one part of the lung (intrapulmonary, aka intralobar sequestration). We do not know what causes one part of the lung to develop abnormally. The cystic tissue involved will never function as normal lung tissue. There are several types of cystic lung lesions including Congenital Pulmonary Airways Malformation CPAM (aka, congenital cystic adenomatoid malformation CCAM), pulmonary sequestration, and defects that are a mixture of these two. The abnormal piece of lung can be microcystic (many small cysts) or macrocystic (several large cysts). Pulmonary sequestrations are distinguished from CPAMs by the presence of a blood vessel that comes directly from the main artery (aorta) into the lung mass. The purpose of this page is to keep our friends and family informed with the progress of Aiden's journey and help raise awareness about CDH.
Following Aiden’s birth his health began to deteriorate quickly. Imagine that all your research on CDH and conversations with other parents makes it clear, that it is vital that you deliver in an ECMO facility (a hospital that offers ECMO as a source of lung/heart support). Imagine that all your research states that 50% of all babies born with CDH need ECMO treatment. As a parent, your first desire is to help and protect your child anyway possible, so your natural instinct would be to make sure that you are delivering in a facility that is fully equipped to deliver and care for your sick baby and give him a fighting chance. Imagine that when your sick baby codes (v Fib) in the hospital, requires resuscitation, his body will not respond to any medications, ventilation or other forms of life support, his organs are shutting down and he needs emergency ECMO. The physician expresses that he needs ECMO, with relief you say, “Great, you have it,”….because you research this, you spoke to all the members of your team and you even saw it listed on the hospital site, but the physician looks at you and says, “No, we have it for our heart patients, not our lung patients.” Your heart drops and your world stops, what….have…. you…. done?
CDH comes with a life long journey, fear, uncertainty, and the possibility of reherniating at any time. As time goes on, Aiden’s biggest obstacle is a result of the traumatic brain injury (Hypoxic Ischemic Encephalopathy-HIE) he suffered after coding and needed ECMO support. After he coded, their attempts to resuscitate him with other ventilation sources and life-support were unsuccessful, so they resorted to manual ventilation (hand-bagging) which extended over the course of a 12-hr time period where he did not receive proper oxygenation to his brain and other organs. This time spanned from the time he coded, Sunrise making the decision to transport him, until the life-flight team from UT at Primary Children’s Hospital transported him to their NICU in Salt Lake City and performed an emergency crash surgery to place him on ECMO.
Due to Aiden’s Hypoxic Brain Injury among multiple other complications, he spent nearly three months in the NICU. Aiden is home now, but our lives are very different. Aiden has been diagnosed with spastic quadriplegia cerebral palsy and cortical visual impairment as a result of his brain injury. Our days are quite filled consisting of outpatient private therapies with speech, feeding, occupational and physical, home therapy with occupational, vision services and assistive technologies (learning to use communication devices) , weekly checks with his local pediatrician and lung specialist, and we travel to Salt Lake City, UT to Primary Children’s Hospital every six months for checkups with his specialist care team (which include neurology, cardiology, nephrology, pulmonology, gastroenterology, ophthalmology, audiology, comprehensive care, and with his surgeon & dietician). During our most recent visit this week (Nov. 26-30, 2018), it was discovered via chest x-ray and an Upper GI that Aiden has in fact reherniated, and will likely require another surgery in the future to correct his hiatal hernia and paraesophageal hernia. Aiden care is quite extensive and we have only just started. Due to Aiden’s physical limitations, he has a gait trainer and stander to assist him, but now we are looking at wheelchairs and special needs adaptive strollers, additional equipment to help him day-to-day, extensive therapies out of state, possible stem cell treatment and SDR surgery, which all is not covered by insurance and upwards of $80,000-100,000. In addition to these expenses, we are looking for a home to accommodate Aiden’s needs with the use of his equipment (gait trainer, wheelchair, and creating a specialized space for his home therapies, etc.).
I truly do believe that all of this is for a reason, but we are in need of help right now and I am praying that an angel investor/donor or someone with just a good heart has a desire to help a special needs family/family facing a financial hardship. Between all the changes we’ve had financially, income change, Aiden’s care and everything that goes along with it, we are at risk of losing it all and need a substantial amount to stay afloat. I don’t understand this season I am in right now, but I have continued to stand firm through prayer & fasting believing for clarity and direction through it all. We are facing so much in every aspect of our lives and we just continue to get blow after blow. We need help, a lifeline, a miracle and we need it now. I am holding on, but my God it has been so hard. If our story touches you and you find it in your heart to give or even share our story, just know that it is appreciated and will be a blessing beyond what you could ever imagine. Love & Blessings~Kia
We have openly shared Aiden’s story since he was diagnosed in utero….you can read his story here and learn about our amazing little man: https://www.facebook.com/LoveHopeFaith4Aiden/ or on Instagram at LoveHopeFaith4Aiden
--
Background/Medical Terms:
CDH (Congenital Diaphragmatic Hernia): Occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The wide, flat muscle that separates the chest and abdominal cavities is called the diaphragm. The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen. The majority of CDHs occur on the left side. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected. The result of this is called pulmonary hypoplasia. While in the uterus, a fetus does not need its lungs to breathe, because the placenta performs this function. However, if the lungs are too small after the baby is born, the baby will not be able to provide itself with enough oxygen to survive.
BPS or Pulmonary Sequestration (Bronchopulmonary Sequestration): A pulmonary sequestration is a cystic piece of abnormal lung tissue that does not work like normal lung tissue. They usually appear next to the lung (extrapulmonary, aka extralobar sequestration) or within one part of the lung (intrapulmonary, aka intralobar sequestration). We do not know what causes one part of the lung to develop abnormally. The cystic tissue involved will never function as normal lung tissue. There are several types of cystic lung lesions including Congenital Pulmonary Airways Malformation CPAM (aka, congenital cystic adenomatoid malformation CCAM), pulmonary sequestration, and defects that are a mixture of these two. The abnormal piece of lung can be microcystic (many small cysts) or macrocystic (several large cysts). Pulmonary sequestrations are distinguished from CPAMs by the presence of a blood vessel that comes directly from the main artery (aorta) into the lung mass. The purpose of this page is to keep our friends and family informed with the progress of Aiden's journey and help raise awareness about CDH.
Organizer
Nikia L Dyson
Organizer
North Las Vegas, NV
