How much does open heart surgery cost?: The Million Dollar Baby
Many people are curious about the cost of open heart surgery. I know I was and still am. Unfortunately, like all healthcare things in the United States, it is not so straightforward. For an extremely anecdotal reference, the hospital billed our insurance $162,241.02 for my daughter’s second open-heart surgery hospital stay. Her healthcare costs for her entire first year of life, including two open-heart surgeries, surpassed $1.5 million USD.
Whether you are a new parent to a baby with Congenital Heart Defects facing open-heart surgery, or just want to understand the impact of CHD on a family, let’s discuss how much open heart surgery costs. And I’m not only talking about the numbers.
At 25 weeks pregnant, I was informed my baby would need open-heart surgery by the time she was 6 months old. Fast forward to 1 day post-birth, I was told she would need open-heart surgery as soon as possible and that wouldn’t be her only one. In her first year of life, my daughter went through two major open-heart surgeries and countless other special medical care and procedures. We had an insurance representative personally assigned to us that would regularly call me. Seriously!
Approximately 25% of babies born with CHD will need heart surgeries or other procedures within their first year to survive. Unsurprisingly, managing CHD and heart surgeries comes with significant extra costs. Million dollar babies they’re sometimes called.
NOTE: This is written from the perspective and experience within the United States healthcare system. Healthcare costs, insurance, and billing will vary elsewhere.
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What is the cost of open heart surgery for a baby?
According to a study in 2012, open heart surgery costs for children range from approximately $30,000 to $100,000 in the US, and still numbers can fall well outside of this range. Heart surgeries range vastly in complexity and thereby so does the cost.
Source: NIH
How much does open heart surgery cost with insurance for a baby?
Open heart surgery is life-saving and medically necessary so insurance has to cover the surgery. Surgery costs are billed to the insurer, not the patient. However, this doesn’t mean the patient will see no bills at all. Depending on the baby’s insurance plan details, some portion may need to be paid by the family. Since some surgeries are exorbitant, even having to manage a small percentage can be prohibitively expensive.
How much does open heart surgery cost without insurance?
Surgery costs should be the same with or without insurance, however, if someone doesn’t have or doesn’t want to use insurance then the hospital can often offer a discount making it, in a way, cheaper. Discounts vary significantly.
However, it is unlikely that someone will pay for open heart surgery for a baby out of pocket, in cash, and not use health insurance. A baby going through open-heart surgery has no other option, it is a medical necessity and therefore insurance needs to cover the cost.
If a family elects to have their baby’s surgery in another location or chooses some alternative option, out-of-network doctors or hospitals, that is not deemed medically necessary, there could be a need to pay for certain costs out of pocket.
The hospital should have a social worker who can assist in figuring out healthcare costs and options. In general, if paying for healthcare in cash, doctors and health facilities commonly offer a cash discount (compared to what is billed to insurance companies) and payment plans.
What is the cost for a baby to have an AV canal defect repair?
In Massachusetts, a baby’s AV canal defect repair cost $76,370 for the primary and assistant surgeons. This was for the two surgeons performing the surgery and does not include the other costs and fees from the hospital, other medical personnel, hospital stay, services, and supplies. The total bill for this surgery and hospital stay was $162,241.02. Once again, this is anecdotal, as every CHD warrior’s heart is unique and every surgery will be customized.
Certain personnel, services, and equipment are billed separately (e.g., physicians, surgery, operating room, anesthesia) which can make trying to understand and compare surgery costs difficult.
How much are medical costs for a baby with complex Congenital Heart Defects?
CHD parents have reported medical costs for their baby’s first year with complex CHD totaling $500k, $1 million, $5 million, and even upwards of $10 million.
Surgeries, hospital stays, emergency transport, and inpatient services typically incur the highest charges. The greater the complexity, the longer the stay, the greater the charges. Outpatient services, medical appointments, and other needs also add to the overall care costs.
Breaking Down the Bill
Healthcare costs in the US lack clarity and can be challenging to comprehend. It can feel impossible to understand and compare healthcare costs.
There are too many variables (some controllable, some not) and inconsistencies in the system. A few factors impact healthcare costs the most, including, location, insurance, and the individual medical case and need.
Location impacts healthcare expenses hugely. Healthcare costs vary by state, by city, and even between hospitals in the same city. If you look outside the US, open-heart surgery costs will range even further.
There is no elective open-heart surgery. Babies only have open-heart surgery if it is a medical necessity. This means that health insurance should cover most, if not all, of the surgery costs.
Nevertheless, insurance providers and plans vary and offer different coverage. Not all insurance plans are created equally and some offer and provide coverage in different ways. This can impact how much you need to pay, when you need to pay, and how you need to pay.
Thankfully due to the Affordable Care Act, insurance companies are no longer allowed to deny coverage due to pre-existing conditions. This means those with Congenital Heart Disease cannot be denied coverage due to CHD.
The patient’s individual circumstances significantly affect the cost of the surgery. Their unique heart defects, state of health, complications, risk factors, and more will play into the cost calculation. Even with a specific plan in place and cost estimates, things can change during surgery and recovery affecting care costs.
Considering these factors and others, the cost of open-heart surgery is not perfectly clear or even an easy number to estimate.
As frustrating as it is that the surgery cost is unclear, it should be covered by insurance and hopefully a nonissue regardless of the cost. While this is the case for many, this is not the case for all families.
Beyond Medical Bills: Secondary Expenses
Looking past the direct medical bills, there are secondary expenses when your baby needs open-heart surgery that many do not think about at first.
Taking care of a baby with CHD who needs heart surgery can significantly impact a family, even beyond the essential surgery costs. There are other expenses to consider such as time off work, extra childcare, and travel expenses.
These may seem minimal at first, but can add up significantly. Understanding these should enable parents to plan as best as possible.
It is not uncommon for babies with critical CHD to require numerous medical appointments, special caretaking needs, medications, therapies, and hospital visits, especially during their first year.
This is not easy to manage for most working parents. There is a limit to how much, if any, paid leave a parent has. Sometimes a CHD parent may need to take unpaid leave to care for their heart warrior. And unfortunately, some may lose income or even their jobs entirely due to these circumstances.
If a heart warrior baby has siblings, there could be additional expenses necessary to care for them while the parents are attending to CHD and surgery needs. For example, due to the intensive, round-the-clock, needs of my daughter, we had to unexpectedly spend more on childcare for our older children (through increasing school hours and a nanny to assist in pick-up).
Even seemingly small expenses add up for heart families. When you need to drive an hour to appointments regularly, your gas spending increases. Due to the lack of time and energy, you may spend more money on services and quicker options, such as delivery groceries, cleaning services, take-out food, etc.
If your baby has heart surgery too far from home to drive back and forth, you need to consider accommodation costs. Sometimes there are options and resources to help minimize these costs, but not always and not 100%.
Furthermore, deductibles, coinsurance, copayments, extra supplies, parking fees, and more add up quickly. These secondary expenses are not covered by insurance. Families are responsible for these things themself and it can be a real burden.
Outside the Monetary: Hidden Costs
Medical bills and secondary life expenses are not the only things that cost a family when faced with open-heart surgery for a baby. Some hidden costs that aren’t discussed enough have no specific dollar value but are very much a cost to CHD families.
The stress, care needs, and time demands strain parents, and even siblings, and other family members. These stressors and factors can impact mental health, sleep, job security, career progress, physical health and wellness, relationships, school performance, and more. Plenty of these can also have a domino effect on other areas of life.
Coping with the Costs
The hospital where your child will have surgery should discuss costs and insurance with you ahead of time. A hospital social worker can help you understand some figures, a plan, and any additional assistance options.
While this should happen, it doesn’t always happen. Sometimes emergencies occur and things aren’t neatly planned.
Be proactive, and reach out to your child’s surgery hospital. Reach out to your insurance company. Talk to them, and ask questions until you understand your benefits and responsibilities.
Even though essential medical services should be covered, still many other healthcare expenses and plan stipulations can cost a family. Strive to understand your type of plan, premium, benefits (in-network versus out-of-network), deductible, coinsurance, copayments, and out-of-pocket maximum.
Families can apply for secondary health insurance for their child with CHD to help further mitigate costs. This could be state coverage, or Medicaid, though the qualifications vary. Primary insurance gets applied first, and then a secondary can be applied to help cover expenses that the first doesn’t.
To cover the extra secondary expenses, some families use savings and others look to their community for support through fundraising. And often it’s a combination of things.
Thankfully there are some foundations, organizations, and other services to aid a family’s medical costs, flights, accommodations, and more for CHD families. Unfortunately, this assistance is not standardized.
Support can also come in the form of non-monetary offers, especially in consideration of those “hidden” expenses. This could look like, babysitting siblings, meal trains, cleaning and housekeeping help, leniency with job flexibility, and emotional support.
So how much does open heart surgery cost for a baby? And their family?
Too much. The answer is too much. It costs families too much, and not only in regards to money.
While the monetary costs are astounding, insurance should cover most of these. Nevertheless, families face extraordinary costs – financial and otherwise – when a baby needs open heart surgery.
The cost and impact of time off work, additional childcare needs, travel expenses, parental and sibling mental health, parent physical wellbeing, sleep, time, relationships, job and school performance all add up and are too much for a mom, too much for a dad, too much for any parent and any sibling.
For those affected families, they say they would do it all for their baby and more. It’s worth it. This can be true and it can also be true that this is all too much.
This is Congenital Heart Disease (CHD).
Critical and complex congenital heart defects cost a family too much. CHD families need more support.
