Choosing a Pediatric Cardiologist

It’s one of the most (if not THE most) important decisions you will make for your child once he or she is diagnosed with a CHD…choosing a pediatric cardiologist. When a diagnosis is made, parents go through so many emotional challenges that this overwhelming task can seem daunting or even impossible. But giving serious thought to who will give your child medical care is so important, and so many parents struggle with exactly what to look for when making their pediatric cardiologist selection for their child. After researching the medical community opinions and receiving parental input, we’ve compiled a list of some of the most important factors to consider when making that choice.

1. Referrals: At first, many parents are referred to a pediatric cardiologist by their child’s pediatrician (or a hospital pediatrician if the CHD is discovered at birth). But don’t feel you have to use the particular doctor who is referred to you. It’s your prerogative and right to be able to search and find the cardiologist that suits your family’s needs.

2. Insurance coverage: Although we hate to have to factor this into our decision-making process, unfortunately for many families, treating CHDs can be a long and costly journey, so knowing that your insurance will be accepted by the doctor/hospital you choose is definitely something to consider.

3. Location: In some cases, families claim they are willing to travel anywhere to seek medical treatment for their child. However, if it’s simply not a possibility for you (ex: work responsibilities, costly travel expenses, frequency of your child’s doctor visits, etc.), then definitely consider the proximity of the doctor’s office/hospital to your home.

4. Basic credentials: This is obviously one of the most important factors. What kind of education and training did the doctor receive? Is the doctor board certified in pediatric cardiology? What types of procedures do they have experience with?

5. Experience with specific CHD: For many, it’s simply not enough to know that a potential doctor has treated patients with CHDs. They want to be assured that the potential doctor has treated patients with their child’s specific type of CHD.

6. Doctor – Family Relationship: After having a consultation with this doctor, does he/she seem to be willing to work with your family and not just the patient (in other words, are they interested in educating and keeping you all informed or are they merely interested in treating the CHD)? Also, do you get along with this doctor (this may seem insignificant, but for many parents finding doctors whose personalities are compatible with their own makes their treatment journey that much easier)? Having said that, this may be one area that most parents would sacrifice if the doctor is exceptionally talented in their medical field of practice.

Even though this can be quite a stressful time, knowing what to look for when it comes to choosing your child’s medical caregiver can provide some much needed peace of mind.

An Insurance Story

Lately we've been receiving quite a few stories from families that wish to share information that may help others. We'll now begin posting them regularly! Meet Lauren, a CHD mom who describes her battle with insurance...

I'd like to share our story. When I got pregnant with our 1st daughter I was covered by my employer's health insurance. When we found out about her heart issues - HRHS, pulmonary atresia, Ebstein's Anomaly - we were told we'd have to deliver in the lower 48 as we live in Alaska and there are NO heart surgeons here who do kids. We chose Seattle.

The Children's Hospital said I should apply for Medicaid; a lot of their kids from AK were on it, they said. I at first thought "no way" because I thought that since I have a job and insurance that I didn't need it, wouldn't qualify. We got on and were lucky we did as her delivery, 1st surgery, and all costs for her 1st year were covered 100% - including her 2nd surgery, travel to Seattle, staying there, as well as all the PT and OT services she needed. When she got to be 1, we heard about a program called TEFRA, which in Alaska also covers kids with complex medical conditions; provided they also meet a certain "level of care" threshold. She got on that and was covered until it came time for our 2nd renewal - before she turned 3. They said she didn't meet the "level of care" requirement. We said "BS" and appealed, got an attorney, the whole 9 yards. We said that she has the complex condition, and she hasn't even had all her surgeries - she still needs 1 more. Plus she takes a Heart med and aspirin, and she still needs therapy services - documented now by the school district, since she qualified for special needs preschool due to her need for therapy. They still denied us - their rationale for deciding she didn't meet the criteria??? I worked and I had to put her at a babysitter's house!!!!

So, now I am lucky to work for a large company, widely recognized as one of the best places in the country to work, so I get good benefits (thank heavens). Before I got hired, I was pregnant again, and in a last ditch effort to provide full insurance for my daughter, I applied for Medicaid again. I got on because I was pregnant. She didn't. There are 2 different income levels they use for qualifying you, and she was evaluated on a lower one because she technically already had coverage (I was a contractor for the Feds and got the barest of bare bones coverage from that). However, when I got my new job, during open enrollment, I saw that a high deductible plan covered everything at 100% after you meet the deductible. I quickly signed up for that for this year because I was pregnant, so I knew we'd meet the deductible. I also knew I would never have to pay a penny of it because Medicaid would pay all costs insurance didn't, and by the time our daughter needed a 3rd surgery, this last March, I thankfully did not have to pay a penny of it - though we did have to pay for airfare, and a token fee at the Ronald McDonald house, as well as food.

Next year, I don't know what I'll do, I just pray she stays healthy and out of the hospital.Thanks for letting me share!

~Laurel Nelson
Anchorage Alaska

Thank you for sharing your experience navigating the insurance maze, Laurel.

Do you have a story you want to share? Tips for CHD survivors or parents? Send them to us at learnaboutchd@gmail.com and we'll be happy to share them here in cyberspace!

New Grants Available for Families Struggling With Child Health-Related Expenses

MINNEAPOLIS (April 10, 2008) – UnitedHealthcare Children’s Foundation (UHCCF) announced that new grants are available to help children who need critical health care treatment, services or equipment not covered or not fully covered by their parents’ health benefit plans.

UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 for child medical services and equipment by completing an online application at http://www.uhccf.org/. Tax-deductible donations can also be made online.

To be eligible for grants, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and be covered by a commercial health benefit plan. “We are taking action to improve access to health care in America and are dedicated to helping more children and families this year and beyond,” said Matt Peterson, UHCCF president. “We encourage families who need assistance paying for their child’s medical needs to visit the UnitedHealthcare Children’s Foundation Web site and apply today.”

The foundation aims to help more children by increasing awareness of the foundation through fund-raising events, partnerships, newspaper and Web advertising, and a revamped multimedia Web site, www.uhccf.org/.

About UnitedHealthcare Children’s Foundation
The UnitedHealthcare Children’s Foundation is a nonprofit 501(c)(3) organization that strives to enhance either the clinical condition or quality of life of children who have health care needs not fully covered by commercial health insurance. Foundation funding is provided by contributions from employees of UnitedHealth Group as well as individuals and corporations. While UHCCF receives contributions from UnitedHealth Group and its employees, individual and corporate donations to help provide assistance are deeply appreciated. To donate or learn more, please visit http://www.uhccf.org/.

Health Insurance Help for CHD Families

Are You or Someone You Know Eligible for Free or Low-Cost Health Coverage?

The Foundation for Health Coverage Education (FHCE) has developed an interactive web site that allows consumers from all 50 states and the District of Columbia to assess options available. "While the information on the site isn't new...its interactive format lets users shortcut through complexities to personalized options much more quickly and easily. The foundation, funded largely by the insurance industry, argues that the oft-cited figure of 43 million uninsured Americans includes many people who don't know of the choices available to them." (Gerber, Washington Post, 8/21)

The website is one of four ways the FHCE highlights on their website to help people find coverage.

1. Website/Health Coverage Eligibility Tool - Consumers answer 5 questions to help determine which programs they could qualify for.
2. Phone/US Uninsured Help Line - A Hotline (800-234-1317) is available 24 hours/7 days a week.
3. Health Care Options Matrix Grid - Consumers can print or download their state's free quick reference guide to public and private health care options.
4. State-by-State Application & Enrollment Database - Consumers can find resources and applications, by state.

The mission of the FHCE is: "To simplify public and private health insurance eligibility information in order to help more people access coverage."

To access these tools on the FHCE website, go to: www.coverageforall.org/

Insurance Info

I received two replies that I thought may be helpful to share concerning the insurance issue previously posted. Hopefully they might be helpful for families like ours that struggle to find insurance answers.

Also, I found the following organization, Coalition for Affordable Health Care, that has data, facts and info about current insurance initiatives, bill failures, proposals and more in the US. According to them, 60% of persons in small businesses is uninsured. Other uninsured majorities include minorities, self-employed and high-risk individuals.

We became pregnant with our son right after my husband had graduated from college, so we were on the state health care plan. The entire pregnancy we were unemployed as my husband searched desperately for a job. Two weeks
before Jacob was born He found employment with a great company with decent benefits.

Being on the state health plan, if you are pregnant when you are on it they are obligated to cover all the pregnancy, birth and one year after. So, we got lucky, even though we had other insurance by the time he was born - his
surgery, everything was covered 100% - we never saw a bill. We realized how fortunate we were as we visited with other families who were still trying to pay their hospital bills.

A year later my husband switched companies and there was to be a period before benefits would start - everyone would be covered under cobra - except our son. Luckily the new employers used the same insurance company, so we were able to keep from breaking coverage. It is a hard reality to us that my husband would need to stay employed with a company that offered great benefits becuase we wouldn't be able to find insurance for our son otherwise. We looked at other supplemental things and it is always the same - no coverage for our son. We considered
doing some of those life insurance things for children - no coverage for him. We've been more fortunate than most - I just don't know how they manage it.

There is a lot of pressure. Any time my husband considers looking for new employment, benefits are a MAJOR factor - as well as not wanting to move away and leave our awesome doctors who know us and our situation so well. I can't help either, we have 5 children (our fifth born in December - almost 2 months old now) and I stay at home with them and teach piano lessons, so like in your family, the responsibility to ensure our son lies on my husbands shoulders. I feel guilty too not being able to do more to help.
--Julia

California Children’s Services will pay for your child’s cardiac care until she is 21 years of age. She should also be eligible for MediCal as well or maybe Healthy Families. I see middle income and lower income families that have the same problem. Check out the webpage of http://www.dhs.ca.gov/pcfh/cms/ccs/ to see if you are eligible.
--Norene

NOTE: Norene has been kind enough to offer to look further into this with other states. To my knowledge, the state in which I reside (Virginia) does not have a program under which we can be covered, as a family of 4 (which is what we are) must make $42k or less to qualify.

Thank you, ladies, for sharing your information and stories!

Uninsurable

I'm wondering how many other families there are out there who have heart children that have been deemed "uninsurable." Here is our family's story...

Our daughter was born in September and had open heart surgery almost immediately. My husband's employer was AWFUL about giving him time off to be with his tiny newborn, and he soon began to look for another position elsewhere. Fast forward to April of 2007, and he took a contracting job for a major financial firm. Because he is not an employee, he does not get benefits. I am a small business owner, so we made the assumption that we could still find somewhat affordable insurance.

The reality is that we can not find ANY insurance that is willing to provide coverage for our "heart" baby, who had the ASO switch in September 2006. We have been told that it will be a total of five years before insurance will be considered for her, but that the rest of our family may be covered.

It's a sad state that our healthcare system is in. I would consider our family to be "middle class," yet we have no access to insurance for our daughter. We have been told time and again that we would be better off in terms of health care for her if we were on government assistance (welfare). Every time we walk into the pediatrician's office (which, of course, is often) it's a huge hit.

Has anyone else faced this dilemma? Email me at learnaboutchd@gmail.com.

7 For 7: How CHD Changed My Life

This post is a little personal, but something I was inclined to write after the last few weeks of complete submersion in the CHD community. I found that the very same things that have changed so drastically in my outlooks and life are shared by many families with CHD. Here are the top seven things that came to mind as I thought of how our lives have changed forever.

1. Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
   
2. My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When my daughter was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to "manageable" sums. When my husband switched jobs, we found out our daughter was "uninsurable" from an endless parade of providers.
3. Learning to Let it Be. With my first child, I spent hours upon hours in instructive play, and when my second child came out with a "defect," was determined to do the same to keep her at or ahead of the milestone charts. Instead, her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
4. Financial Challenges. I hate talking money, and frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, hotel or hostel stays and travel costs can add up. Not to mention the medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to talk about but needs to be said. We are lucky - we've taken a hit, but we're surviving. Other families have lost everything and are fighting not only for their child's life, but for their family's ability to survive financially. Every CHD family I have met has been affected financially - whether upper or lower class, or somewhere in between! It's not something you can plan for or prevent.
   
5. Learning How Tough Marriage Can Be. My husband and I have definitely had our ups and downs since we got married 12 years ago, but nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from your spouse than ever. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on her sibling), and you lose a lot of yourself in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
   
6. Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. My daughter has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and I often smile, knowing that that person has no idea that this screaming banshee in my grocery cart is an ultimate survivor.
7. A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!