Having child in itself is not cheap but having a child with a chronic condition sucxh as a CHD is extremely expensive.Depending on the insurance your family has the copays for perscriptions or doctor visits can range from $5 too $100 or even higher.Insurance doesn’t cover everything so parents are still left with large bills.Especially when their child is hospitalized or subjected to expensive testing. I was in the hospital for six weeks when I was 12 and 4 of those six weeks I was in the Pediatric ICU.My bill was expensive. My mom told me later that it was over a million dollars.
Then there are the insurance companies that won’t pay for things that are vital to monitor a CHDer’s condition.Such as a Pulse Oximeter.Many insurance companies refuse to cover it if your child is not on oxygen.Just because a child is not on oxygen does not diminish the need to keep aware of his or her oxygen sats.How can parents know how low it’s slipped if they don’t have an accurate oximeter? They can’t.So they end up paying out of pocket for a device that insurance SHOULD cover. I know parents say that it’s completely worth it to keep their child healthy,but I also know how frustrating it is not getting a valuable piece of equiptment covered by insurance.
Parent have to continually fight for their child to get the coverage they need and to get the equiptment they need when the insurance company refuses to cover it.It shouldn’t be a struggle but it is because insurance companies are not educated in the needs of heart children.
Some parents elect to have some sort of fundraiser for their CHDer to help with the costs of a hospitalization or medical treatment or even everyday living expenses.I know some people don’t want to contribute because they are afraid they are being scammed.That is a very real fear and also a very rare occurance.The vast majority of these fundraising events are legitimate and necessary to keep families from feeling as though they are drowning in bills.Families often feel bad that they are asking for money,but when a child has a CHD,the medical expenses never go away.They continue on throughout the child’s life. Raising money is something that friends and family can do in support of the CHDer and the rest of the family.To help ease the strain slightly.
Life 
Aug 20, 2010 @ 20:30:45
This rings too true for so many of us. We have elected to cover Hope on both mine and my husband’s insurance…which is a huge monthly expense. My husband has a lifetime max (which I think they have to eliminate next year), so we made sure to get her on mine. It really is sad when something as important as a pulse ox is not covered and I am thankful that our insurance continues to cover it every month. I also know parents that do not get home health care. I love my nurse and feel like I have a second pair of eyes checking on Hope every week. I have already told her cardiologist that I am fully expecting her to find some way to help me justify it to insurance until Hope is 18 (LOL).
As for the fundraiser…I am all for it. I think it is a great idea and try and support them anytime I see or hear about one in the area. We have not really needed too much financial assistance (although it would be nice for some assistance with her high-priced formula, medicine, and co-pays), but I wanted to help in some way. I have been organizing a fundraiser for The Chidlren’s Heart Foundation and even though it is a lot of work and we are probably not going to raise thousands of dollars, I feel like I am contributing to something that benefits Hope.
Great post…as always!
Aug 21, 2010 @ 01:51:17
Great BLOG. many people don’t realize the financial stress placed on families with a sick child. The meals for parents while in the hospital the parking, the road trip expenses. It all adds up. Last week when my grand daughter was life flighted by lear jet to Atlanta My daughter in law didn’t even have her pocket book just a diaper bag and her wallet. My son ran home packed a few things and drove the 6 hours. He forgot undies and pjs for his wife. An unexpected expense. Then in step down when they could dress her she needed clothes. My sister and I luckily helped with that one and had a fun time doing it. It all adds to the strain on already sleep deprived stressed out parents whose only concern should be their child. CHD families need an organization that understands this and had funds available to help. That recognizes this and takes into consideration lost wages for parents that have had to stop working to stay at home with their little warriors. When my son was born with cancer and their was an organization and still is an organization in my area that understands this and I hope more of these organizations form. It’s my hope to one day do just that.