Health Insurance for Babies with Down Syndrome

Today Ryan McCostlin, a team member at Bernard Health, is going to share the Top 5 Health Insurance Tips for new parents of babies with Down syndrome.

When new moms and dads have a beautiful new baby, the questions can seem endless. What are the right foods? ...the right child care? ...do I need to buy Kidz Bop records, or is it okay if I play The Rolling Stones?

And while learning how to be a new parent can be a heck of a lot of fun, finding the right health insurance strategy... well... isn’t. . I happen to be someone who spends most of his time thinking about health insurance, and even I can admit that on the fun spectrum, shopping for health insurance can fall somewhere between tax audits and root canals.

That said, all parents spend time thinking about how to plan for expected and unexpected medical expenses. And for parents of babies with Down syndrome, there can be additional costs associated with neurological exams, cardiology exams, thyroid screening, etc. So while finding the right health insurance strategy might not be very much fun, it is important.

So, what should new parents of a baby with Down syndrome know as they begin to research health insurance options? Here are the top 5 tips:

1. Depending on your income and your state’s rules, your child may qualify for a government subsidized health insurance program called Medicaid. The name for the program varies from state-to-state... for example, it’s called MediCal in California and TennCare in Tennessee, but each state’s program is a version of the federal Medicaid program. If your annual income is too high to qualify for Medicaid in your state, your child may qualify for another government program called CHIP. To research government subsidized options in your state, you can click here.

2. If you have group health insurance through an employer, most employers have a 30 day window from the birth of your child to add him/her to your plan as a dependent. If you choose to add your child to your employer’s health plan, make sure you share your good news with your HR representative so you can fill out the appropriate paperwork!

3. If you don’t have access to insurance through your employer and you don’t qualify for a government program, you can still get coverage for your child through an individual health insurance plan. Child-only plans aren’t available in every state, but because of healthcare reform, children cannot be denied coverage by health insurance companies as long as at least one eligible parent also applies.

4. Consider enrolling in a Health Savings Account based health insurance plan if your employer offers one... and especially if you’re enrolling in an individual plan for your family. At first glance, it may seem like a co-pay based health insurance plan is a better option, but Health Savings Account based plans often have a true annual out-of-pocket limit on spending. After you meet your deductible, your child’s healthcare is free for the rest of the year. Families with lots of healthcare expenses often find that Health Savings Account based plans can help them come out ahead

5. Health insurance can be complicated, and it’s especially important for new parents of Down syndrome babies to consider all of the available options. If you need more help, there are several resources available who can provide guidance. As you consider where to seek additional help for your family, know that there are three basic categories of advisors:

First, each state has a State Health Insurance Program (SHIP) that can answer basic questions about health insurance eligibility. Advice from SHIP employees is free, and you can find your state’s SHIP contact information online.

Second, you can find a health insurance salesman who may be able to help you research private health plans. Health insurance salesman don’t charge you anything up front, but they get paid when they sell you an insurance policy.

Finally, many families find it helpful to work with fee-based health insurance advisors who, for a flat fee, can help you navigate the complexities of the individual health insurance market. This option is similar to a tax advisor or CPA who helps you prepare your taxes. While the flat fees vary, health insurance advisors usually don’t work on commission, so their only incentive is to help you get the right strategy in place for your new child.

More about the author: Ryan joined Bernard Health in 2010 to help families save time, save money, and get peace of mind as they consider affordable health insurance options. Through a network of retail stores, Bernard’s team of licensed, non-commissioned health insurance advisors provide face-to-face advice to families across the country. He earned a BS from Vanderbilt and an MBA from Yale. Ryan can be found on LinkedIn and Twitter.

Heart Scar

One of the most frightening things parents may ever face is surgery on their baby. It is said that approximately 45% of babies with Down syndrome are born with a congenital heart defect. Many of these defects require corrective surgery. Before you read anything else, know that heart surgery today has a 95-99% survival rate. I can’t minimize the fear and risks involved but it is important to know that these are very common surgeries performed by excellent, experienced pediatric heart surgeons.

The most common defect is a hole in the heart between the two upper and/or lower chambers which allows oxygenated blood to mix with blood that is returning into the heart. These types of defects are called AV Canal (endocardial cushion defect), VSD, and the less common ASD.

The hole in the heart types of defects usually lead to open heart surgery when the baby has gained some weight and grown a bit. The timing of surgery is often decided by balancing weight gain versus the slide toward congestive heart failure (CHF). CHF is the medical term for saying that the heart cannot continue to do its job without the support of medication (lasix, digoxin, etc.) and perhaps oxygen.

While I am talking about such scary stuff, I will also mention there are more rare heart defects that require surgery before a baby can leave the NICU. A coarctation of the aorta is one such defect.

A baby with a congenital heart defect will be followed by a pediatric cardiologist. She will get echocardiograms (a fancy heart ultrasound) and heart x-rays. She might also get an ECG (the test where they stick the wires on her chest and measure the heart’s electrical activity), or even perhaps a heart MRI. All of this information is shared with a pediatric heart surgeon and he will use it to determine the appropriate surgical fix.

When I first heard (at 30 weeks gestation) that my baby would need heart surgery for an AV Canal defect, I was terrified. The sick-to-my-stomach kind of scared. And I had visions of an angry red zipper scar running from the bottom of her neck to her abdomen. When at three weeks old they told me she had a coarctation of the aorta that required immediate surgery, you could have knocked me over with a single breath.

So yeah, I won’t minimize it. Heart surgery is scary for us parents. The first look at recovery is daunting. There are multiple wires and tubes attached, each serving a unique purpose. But, your baby is feeling no pain and she is being cared for by two or more cardiac nurses specially trained to aid in her recovery. You however may need a stiff drink.

The recovery period for a baby is amazingly quick. In most cases, you will be home within two weeks of surgery. Six weeks later, you will stare at your strong happy baby and wonder if it ever really happened. And there it will be, a thin line a few inches long drawn down her chest, the heart scar. The badge of courage and strength, that if kept out of the sun, will nearly fade away over the next few years.



Your Turn
If your baby has a congenital heart defect that requires surgical repair, you may want to take some time to visit the blogs listed under the Sweethearts & Fighters blogroll in the left column. The path is well worn and you may find encouragement and peace as you read through the stories of those who have walked before you.