Excellent report, actually I was talking with another mom of baby with CDH of the impact of the economy on families. My baby has HLHS and we are from México, here in our country the public health programs can't affort high costs of treatments, eventhough are just 2 or 3 hospitals in whole country that attend those six complex CDH's; in our case, we found a group of doctors who take the chance to work together and treat my son in a minor hospital without infrustructure enough and non medical experience in this type of CDH, we spent 9 months on the hospital, I know the costs are not the same between Mexico and USA, but we spent around direct cost 12 million pesos (private insurance), but for our economy is impossible to pay, he is only 16 months of life.
I agree that 2.1 mil is an undercount. For life events like under education and an in ability to have children and job lock were huge and devastating. Sometimes having to choose to get testing like a blood draw just this week is weighed by when I can afford the copay. I am still paying for my surgery from last year, my 5th ohs and the blood draw will add another 800$ to it. At 63 I am wondering if it has been worth it.
Thank you for this article! All I can say is that I am eternally thankful for the Affordable Care Act! This is a serious undercount in my son's case. His pacemaker implant in 2021 alone cost more than 1500000.
Wow wow wow. It’s funny, I was just having a conversation about the financial impact of cCHD with our home nurse. We were lamenting on the fact that this is what the doctors don’t talk about with families expecting a baby with a cCHD. “He’ll have three surgeries and then live a normal life,” is the refrain many families hear. And we then expect that we, too, will have normal lives. Slowly over the last nine months, I’ve come to realize how false that notion really is. And how damaging it is that this information isn’t widely known amongst families with kids like mine. When each heart family feels isolated, or like their child is the only one whose experiences have been complex, the “problem” of life falling down around them feels personal. It feels like bad luck or worse, a personal failure. When really, as the data shows, it’s statistically likely. If we all knew this, if we found a way to share this information in a way that inspires action and policy change, I think we could really, really make a difference for families and, in turn, the cCHDers themselves.
Doctors can restore life in babies who would otherwise not be with us, and that is miraculous. Full stop. Who will step in to help us learn how to reconstruct our lives, our finances, our potential, so that our babies and families can live with our miracle and truly thrive?
This article and the data give me so much hope. Thank you for this, Leigh!
I love this, Carolyn! It's so hard to balance being upfront and truthful with being wildly discouraging. But as you say, the isolation can be so hard. Resources for reconstructing lives -- that could be such a help!
Excellent report, actually I was talking with another mom of baby with CDH of the impact of the economy on families. My baby has HLHS and we are from México, here in our country the public health programs can't affort high costs of treatments, eventhough are just 2 or 3 hospitals in whole country that attend those six complex CDH's; in our case, we found a group of doctors who take the chance to work together and treat my son in a minor hospital without infrustructure enough and non medical experience in this type of CDH, we spent 9 months on the hospital, I know the costs are not the same between Mexico and USA, but we spent around direct cost 12 million pesos (private insurance), but for our economy is impossible to pay, he is only 16 months of life.
Thank you for sharing your perspective. ❤️
Excellent article on a topic that is rarely discussed! Thank you Leigh!
Thank you for reading!
I agree that 2.1 mil is an undercount. For life events like under education and an in ability to have children and job lock were huge and devastating. Sometimes having to choose to get testing like a blood draw just this week is weighed by when I can afford the copay. I am still paying for my surgery from last year, my 5th ohs and the blood draw will add another 800$ to it. At 63 I am wondering if it has been worth it.
Those are all really important issues. I'm sorry to hear of the rough time you're having. ❤️
Bravo Leigh.
Thanks, Boots!
Thank you for this article! All I can say is that I am eternally thankful for the Affordable Care Act! This is a serious undercount in my son's case. His pacemaker implant in 2021 alone cost more than 1500000.
Wow. Unbelievable!
Thanks for this! I’ll never forget the first time I was hit with a $750 bill for the exercise test, and was required to “pay it all up front.”
That is just a HUGE number for a test! I have had similar things happen.
Wow wow wow. It’s funny, I was just having a conversation about the financial impact of cCHD with our home nurse. We were lamenting on the fact that this is what the doctors don’t talk about with families expecting a baby with a cCHD. “He’ll have three surgeries and then live a normal life,” is the refrain many families hear. And we then expect that we, too, will have normal lives. Slowly over the last nine months, I’ve come to realize how false that notion really is. And how damaging it is that this information isn’t widely known amongst families with kids like mine. When each heart family feels isolated, or like their child is the only one whose experiences have been complex, the “problem” of life falling down around them feels personal. It feels like bad luck or worse, a personal failure. When really, as the data shows, it’s statistically likely. If we all knew this, if we found a way to share this information in a way that inspires action and policy change, I think we could really, really make a difference for families and, in turn, the cCHDers themselves.
Doctors can restore life in babies who would otherwise not be with us, and that is miraculous. Full stop. Who will step in to help us learn how to reconstruct our lives, our finances, our potential, so that our babies and families can live with our miracle and truly thrive?
This article and the data give me so much hope. Thank you for this, Leigh!
I love this, Carolyn! It's so hard to balance being upfront and truthful with being wildly discouraging. But as you say, the isolation can be so hard. Resources for reconstructing lives -- that could be such a help!