What precautions do I need to take in the event that my baby is born with Hemophelia?

Question

My wife and I recently got pregnant with our first child.

My sister-in-law's son is a Hemophiliac (Hemophilia A). She's a carrier. There's no evidence of the disease in the family before them, but that doesn't rule out the possibility of my wife being a carrier as nobody else has been checked. My brother-in-law was born without the disease and is fine and healthy.

My sister-in law has been forced to go on Medicaid, with an income cap of $1600 a month, to afford the medication for this life endangering disease.

To prevent being stuck in the same situation if we had a son that had the disease, what precautions can we take?

My wife is due at the end of July.

Answer 1

Firstly, I would talk to a professional health insurance advisor concerning your health insurance (I believe your work is supposed to provide access to one as part of your health insurance). Bring every document you currently have, and make sure you understand exactly what your liability is, and what's on offer.

Secondly, talk to your local government and hospital officials about this, to see if there is any government support that could be available. They may be able to recommend charities and organisations who work with haemophilia.

Another thing you personally could do is talk to your sister-in-law, and find out if she knows of any organisations who have reached out to her that might be worth talking to.

Once you've got the information, write up a comprehensive plan of what you're going to do in the event of this happening. Use the time available now to think of what you're going to do when you're too tired and stressed to think.

Answer 2

My daughter has cerebral palsy, and I have some chronic conditions that aren't a big deal alone, but the costs add up significantly when combined.

A lot depends on where you work. If you work for a company that provides family insurance, your child is automatically enrolled, pre-existing condition or not. That's generally not the case with plans that self-employed people use.

We make heavy use of a health savings account. Those let you deposit a certain amount every paycheck tax-free, then they reimburse you for copays and other medical costs.

If your child is born with an expensive medical condition, the hospital will assign a case worker to help you with your options. Before that, the best you can do is get good employer-provided insurance, and reduce your expenses to put some breathing room into your budget.

You might want to look into genetic testing to see if your wife is a carrier. Also, once you know if you are having a boy, you could get an amniocentesis to test him.