Baby Aiden James Steuck - CDH Fight
Donation protected
Hi there! I have started this campain for my cousin and his family - below is their story. Anything that you can do to help would be much appricated! Thank you so much for taking the time to read this!
~ Magen
My name is Chris Steuck. Recently, my wife Heidi and I learned of our unborn son’s diagnoses of Congenital Diaphragmatic Hernia (CDH), a developmental condition wherein the diaphragm separating the chest and abdomen hasn’t fully formed. This gap has allowed the stomach, intestines and a portion of the liver to develop in the chest cavity, inhibiting the growth and development of the lungs. It’s a condition which effects roughly one in 2,500 pregnancies and can vary in severity from a small gap, to the near total absence of the diaphragm. In Aiden’s case, the left side hasn’t developed. The resulting abdominal invasion has pushed the heart to the right side of the chest and decreased the lung growth to dangerously low levels. The prognosis is grim. Without treatment, his chance of survival stands at about 20%.
Last Monday Heidi traveled down to Texas Children’s Hospital in Houston to undergo tests in preparation for a Fetal Endoscopic Tracheal Occlusion (FETO) procedure. The operation is minimally invasive and results in a balloon being placed in the baby’s trachea (windpipe). This blocks amniotic fluid from leaving the lungs, thus expanding them and pushing back on the stomach, intestines and liver. It is not without its risks of course – and there are many – but a successful FETO surgery and recovery can greatly improve Aiden’s chances of survival.
Heidi went into surgery on Friday, July 15th, to have the balloon inserted. It went well and she is just starting the recovery process. The balloon will stay in for seven weeks. She will now need to stay at or near the hospital for the duration of the pregnancy. If all goes well with the birth, Aiden will most likely be hooked up to some variation of breathing support and ventilation immediately after entering his new world outside the womb. Surgery would then be required to repair the diaphragm, and he would continue on respiratory support for an undetermined amount of time. In a best case scenario, Heidi and Aiden could be in Houston for at least 5 to 6 months.
This campaign is an attempt to help offset uninsured medical costs and lost wages, as well as food and housing costs for the duration of a potentially long visit to the lone star state. It’s also a way to cover monthly cross-country travel and transportation expenses for myself, our five year old daughter and Heidi’s doctor-ordered chaperone (In order to be eligible for the FETO procedure, she is required to have an adult staying with her, at all times, in case of an emergency). I’m not good at asking for donations. I don’t know how NPR does it. I wish I could offer a mug, tote bag or exclusive unaired episodes of This American Life. All I can give you is our eternal thanks and utmost gratitude
Thank you!
Chris Steuck
Here are some helpful links
Video explaining CDH and FETO (from Texas Children’s Hospital website)
Illustrated description of CDH (from Children’s Hospital of Philadelphia website)
~ Magen
My name is Chris Steuck. Recently, my wife Heidi and I learned of our unborn son’s diagnoses of Congenital Diaphragmatic Hernia (CDH), a developmental condition wherein the diaphragm separating the chest and abdomen hasn’t fully formed. This gap has allowed the stomach, intestines and a portion of the liver to develop in the chest cavity, inhibiting the growth and development of the lungs. It’s a condition which effects roughly one in 2,500 pregnancies and can vary in severity from a small gap, to the near total absence of the diaphragm. In Aiden’s case, the left side hasn’t developed. The resulting abdominal invasion has pushed the heart to the right side of the chest and decreased the lung growth to dangerously low levels. The prognosis is grim. Without treatment, his chance of survival stands at about 20%.
Last Monday Heidi traveled down to Texas Children’s Hospital in Houston to undergo tests in preparation for a Fetal Endoscopic Tracheal Occlusion (FETO) procedure. The operation is minimally invasive and results in a balloon being placed in the baby’s trachea (windpipe). This blocks amniotic fluid from leaving the lungs, thus expanding them and pushing back on the stomach, intestines and liver. It is not without its risks of course – and there are many – but a successful FETO surgery and recovery can greatly improve Aiden’s chances of survival.
Heidi went into surgery on Friday, July 15th, to have the balloon inserted. It went well and she is just starting the recovery process. The balloon will stay in for seven weeks. She will now need to stay at or near the hospital for the duration of the pregnancy. If all goes well with the birth, Aiden will most likely be hooked up to some variation of breathing support and ventilation immediately after entering his new world outside the womb. Surgery would then be required to repair the diaphragm, and he would continue on respiratory support for an undetermined amount of time. In a best case scenario, Heidi and Aiden could be in Houston for at least 5 to 6 months.
This campaign is an attempt to help offset uninsured medical costs and lost wages, as well as food and housing costs for the duration of a potentially long visit to the lone star state. It’s also a way to cover monthly cross-country travel and transportation expenses for myself, our five year old daughter and Heidi’s doctor-ordered chaperone (In order to be eligible for the FETO procedure, she is required to have an adult staying with her, at all times, in case of an emergency). I’m not good at asking for donations. I don’t know how NPR does it. I wish I could offer a mug, tote bag or exclusive unaired episodes of This American Life. All I can give you is our eternal thanks and utmost gratitude
Thank you!
Chris Steuck
Here are some helpful links
Video explaining CDH and FETO (from Texas Children’s Hospital website)
Illustrated description of CDH (from Children’s Hospital of Philadelphia website)
Organizer and beneficiary
Magen Johnston
Organizer
Las Vegas, NV
Chris Steuck
Beneficiary