The Real Financial and Emotional Cost of Caring for a Genetically Sick Child

injured child

Do you know someone who’s been caring for a sick child for a long time already? Or are you caring for one right now? When you’re expecting a child, all you want is for that child to be healthy when they come out of your womb. But there have been many cases that families are not blessed with a healthy child. From the moment a child with a genetic condition exits in your womb, you are forever linked to the emotional and financial toll of caring for and raising this child.

If the child has a genetic problem, you need to see a team of doctors immediately. Usually, pediatricians cannot diagnose this problem on their own. They need a team of doctors to consult with. If it’s a gene problem, it will take some time for the results to come out. The agony of waiting for the results is usually compounded by the often-depressive state that you see your child in.

Understanding the Diagnosis

To diagnose a gene problem, geneticists and medical technicians need to take a sample from your child and use a laboratory incubator to identify and study pathogens in it. Inside the incubator, the temperature must be at 37 degrees Celsius, which is the same temperature as the human body. It usually takes months to conclude this test. The doctors should explain the procedure to you and the family as you wait for the test results.

After the conclusion of the tests, the doctors will call you for another consultation. This is when you will know the diagnosis for your child. It is also the best time to ask the doctors for any possible remedies and therapies that your child can undergo. If there is no remedy to the condition, they will provide a guide for long-term care. This is when the financial constraints start, on top of the emotional turmoil of seeing your child with a medical condition.

The Financial Costs of Long-term Health Care


Most families have shallow insurance. This means that they can get hospitalized without the financial burden, but only for certain mild conditions and accidents. Long-term health care is different. It requires continuous treatments, therapies, medicines, and consultations. At first, because you are focused on seeing that your child survives, the last thing on your mind is the medical bills. But once the dust settles, you have to face the reality that as much as this is an emotional turmoil, it is also a financial one.

Many parents think that their insurance will cover the costs of long-term health care. It won’t. Each medical service comes with their own price tags. Laboratory tests, medicines, doctors’ fees, surgical procedures, and general hospital care cost hundreds, if not thousands, of dollars.

Typically, the insurance can cover ony a portion of the medical bill. If you have comprehensive health insurance, you will still need to cover 10% of the total bill. That’s okay if the bill is around $1,000, but what if the hospital bill has ballooned to $300,000? And that’s just the beginning.

The Emotional Toll of Long-term Health Care

It is one thing to incur a huge debt. It’s another to face the fact that your child may not live a normal life. That adds to the emotional burden that you have to carry as you watch your child grow up and worry about the kind of life that they can only live. You need help as much as your kid does. Do not be afraid to seek help from professionals, as well as your family and friends.

You may think that your mental health is the last thing you want to spend on, but your kid needs you to be in the best mental and emotional state. If you have to go to therapy, do so. There are plenty of affordable and even free counseling sessions for parents like you. If you need a break to simply go out and walk in the park, ask a family member or a friend to look after your child. There is nothing shameful about taking care of yourself. Taking care of yourself is akin to taking care of your kid, too.

Through the years, you will find it easier to handle the stress and pressure of caring for someone sick in the family. It will keep the bond of the family stronger as you help each other cope with your situation. But even if you are saddled with emotional and financial stress, never forget to build the rest of the family up and to make life as normal as possible for your sick child.

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