Help our baby boy fight CDH
Donation protected
Hello friends, family, and community,
Many of you may know that we are expecting our 2nd son. Sadly, his 20 week fetal anatomy scan, revealed a congenital diaphragmatic hernia (CDH), a condition that happens in 1:2500 to 1:3000 births. This condition occurs when the diaphragm does not form completely, allowing stomach, bowels, or other organs to enter the chest and restrict lung development.
With this condition, baby boy (name to be determined!) will immediately need life support, followed by surgery to repair his diaphragm shortly after birth. We were grateful to have discovered this early on in the pregnancy so we could be prepared, but we grieved the news as we began to understand the risk to his health, and possibly his life.
We consulted with both Deaconess Maternal Fetal Medicine and Sacred Heart Hospital where we learned that his stomach and small intestines were up in his left chest cavity due to the large hernia. Thus his left lung has been unable to develop. His heart is also shifted to the right due to the placement of abdominal organs in his chest. To be sure of no other anomalies, I also underwent an amniocentesis procedure to rule out chromosomal conditions and am waiting on an MRI.
Around this time I was researching the condition very heavily and reaching out to other families with CDH survivors. I learned that Johns Hopkins All Children's Hospital (JHACH) in Florida has a special unit specifically for this condition with over a 90% rate of survival, and that they do more than 100 surgeries a year (our hospital in Spokane only does 2-3). I started consulting with them by phone and looking into the financials. My husband and I weighed heavily our decision and decided to relocate me to Florida for the birth so our son could be in the best hospital. Having to take extra time off of work, and being so far from home and community made it a difficult decision, but we want to give our boy the best chance!
Because of the risk of premature labor that often comes with this condition, I will be relocating to St. Petersburg, Florida when I am 35 weeks pregnant in February. I am told right now that I can expect my baby to go to the NICU as soon as he is born and he will be there for a minimum of one month (best case scenario) to several months or more depending on how well he does after birth and surgery.
I am humbled to reach out for financial support, but our costs and need for support will be significant even with our insurance coverage. My husband will also have to take a couple weeks off of work to be with me at the birth, and he does not have paid leave.
We deeply appreciate anything you feel that you can do to help. The money donated will be used for relocation costs, surgical costs, and much needed baby supplies. With encouragement from others who have gone through this before us, we hold on to hope that our boy will be able to survive and thrive thanks to the healing hands of the doctors and the thoughts, prayers, and support from all of you!
Many of you may know that we are expecting our 2nd son. Sadly, his 20 week fetal anatomy scan, revealed a congenital diaphragmatic hernia (CDH), a condition that happens in 1:2500 to 1:3000 births. This condition occurs when the diaphragm does not form completely, allowing stomach, bowels, or other organs to enter the chest and restrict lung development.
With this condition, baby boy (name to be determined!) will immediately need life support, followed by surgery to repair his diaphragm shortly after birth. We were grateful to have discovered this early on in the pregnancy so we could be prepared, but we grieved the news as we began to understand the risk to his health, and possibly his life.
We consulted with both Deaconess Maternal Fetal Medicine and Sacred Heart Hospital where we learned that his stomach and small intestines were up in his left chest cavity due to the large hernia. Thus his left lung has been unable to develop. His heart is also shifted to the right due to the placement of abdominal organs in his chest. To be sure of no other anomalies, I also underwent an amniocentesis procedure to rule out chromosomal conditions and am waiting on an MRI.
Around this time I was researching the condition very heavily and reaching out to other families with CDH survivors. I learned that Johns Hopkins All Children's Hospital (JHACH) in Florida has a special unit specifically for this condition with over a 90% rate of survival, and that they do more than 100 surgeries a year (our hospital in Spokane only does 2-3). I started consulting with them by phone and looking into the financials. My husband and I weighed heavily our decision and decided to relocate me to Florida for the birth so our son could be in the best hospital. Having to take extra time off of work, and being so far from home and community made it a difficult decision, but we want to give our boy the best chance!
Because of the risk of premature labor that often comes with this condition, I will be relocating to St. Petersburg, Florida when I am 35 weeks pregnant in February. I am told right now that I can expect my baby to go to the NICU as soon as he is born and he will be there for a minimum of one month (best case scenario) to several months or more depending on how well he does after birth and surgery.
I am humbled to reach out for financial support, but our costs and need for support will be significant even with our insurance coverage. My husband will also have to take a couple weeks off of work to be with me at the birth, and he does not have paid leave.
We deeply appreciate anything you feel that you can do to help. The money donated will be used for relocation costs, surgical costs, and much needed baby supplies. With encouragement from others who have gone through this before us, we hold on to hope that our boy will be able to survive and thrive thanks to the healing hands of the doctors and the thoughts, prayers, and support from all of you!
Organizer
Bethany Bennetch
Organizer
Chewelah, WA