Sharing is Caring...

I remember the exact second when I first heard the words - your baby has a heart defect. There is no doubt in my mind that I had the deer in the headlights look on my face. In one instant, everything had changed, and as I reflect on that moment in time, I am certain that right then I began the grieving process for my unborn child.  Those feelings lasted throughout the rest of my pregnancy, and were pitted against my feelings to fight for my baby's survival.

I see that same look on parents’ faces all too often in my line of work. My professional position centers me in high risk OB where we care for the pregnant mothers of future heart babies. Being a parent of a child with HLHS, and working where I do, does not automatically qualify me as a person to consult with. I very rarely share my personal story with the patients I meet for research studies. Like most do when working in a clinical setting, I try to maintain a separation between work and home, but every now and then I meet parents that are in such duress I am compelled to offer a glimmer of hope, and I do so very carefully. If you are a parent of a child with HLHS, and your child has been through the staged surgeries, then you understand why it is important to be guarded with your experiences. They are often too much for a future HLHS parent to bear, and outcomes are very different for each child. But our experiences have put us into a very unique position, and as a member of several heart groups where I often meet newly diagnosed parents, I hear a lot of questions from parents, many of the same questions I once had myself. So I share what I've learned.

What surprises me today is hearing from parents their story of diagnosis, and how pregnancy termination is offered as an option, as HLHS is considered a lethal anomaly. Meaning, pregnancy termination can be administered in the hospital setting as a medical termination based on lethal anomaly. Please note that I am in no way judging anyone who chooses this option - my focus is on the terminology - lethal anomaly. A diagnosis of HLHS is no longer a bleak prognosis so it is difficult for me to acknowledge that it is a lethal anomaly. It is if no course of action is taken, but through staged palliation or heart transplant, the survival rate is very good at 90-95% and 80% respectively.  

I often have heart parents in the early stages of palliation ask me questions about my older HLHS child.  This is said of many experienced heart parents. So how did we become the “experts?” By default I suppose. Who better to talk to about everyday life with a heart baby than a parent who has been through it?  And I like the idea of sharing. I like that parents feel the comfort and reassurance that there is hope. Sometimes, hope it all we have. Consider being a mentor to new heart parents through a parent matching program. Some of my favorites are: It's My Heart, Kids with Heart, Little Hearts, Mended Little Hearts, Saving Little Hearts, and Sophie's Heart, but these are just a very few as there are hundreds of parent-matching programs available worldwide, and there may even be one through your child’s very own heart hospital.

Sharing is caring... 

Making Your Way Through the Disability Maze...

On July 14, 2011 the Social Security Administration (SSA) added Hypoplastic Left Heart Syndrome to Compassionate Allowances (CAL) which is a list of medical conditions that meet disability standards allowing Social Security benefits to be provided quickly to those who qualify. The benefits program is called Supplemental Security Income (SSI), a federal income supplement program designed to help aged, blind, and disabled people, who have little or no income; and provides cash to meet basic needs for food, clothing, and shelter.

Applying for this program is not for the light-hearted. It is a maze of paperwork, and it may take months or even years to obtain approval. In many cases, initial claims are denied and the process must be continued through the appeals process. Having just enough insurance and just enough income, we were not eligible to receive the benefits of this program, however, we were encouraged to apply, and I encourage you to at least learn about the programs available. Circumstances change and it’s good to at least know what the process entails.

On the SSA Website you will find The Child Disability Starter Kit which includes a Factsheet titled, “What You Should Know Before You Apply for SSI Disability Benefits for Your Child,” which answers questions about applying for SSI child disability benefits, a Checklist titled "Child Disability Interview,” which lists the documents that you will need for the disability interview (in person or online), and a Worksheet titled, “Medical and School Worksheet – Child,” which lists the information you will need about your child's medical condition to help you to prepare for the disability interview (in person or online). 

Once approved for the SSI benefits program, your child will receive Medicaid (Title 19) insurance and cash benefits. Your child may have to participate in a Continuing Disability Review (CDR) every few years to continue receiving benefits. During a review, the SSA will review your income, resources, living arrangements and your child's medical condition. This process is called a Redetermination, and it may be scheduled or unscheduled. 

If your child was denied SSI, don't give up! You have the right to appeal the decision and the right to obtain assistance with refiling your claim. 

Just recently I learned about a state program called CHIP, the Children’s Health Insurance Program, which provides health insurance to children whose parents have incomes too high to qualify for Medicaid, but too low to afford private health insurance. The CHIP program provides insurance coverage for prescription drugs, vision, hearing and mental health services and is available nationwide.

Undoubtedly, the Disability process is a maze of paperwork, but there are many resources available to help you along the process. The Department of Justice provides information on your child's rights on it's Americans with Disabilities Act website, the Department of Labor addresses your rights as a working parent through COBRA and the Newborn Act, and the Department of Health and Human Services provides information for families regarding health, financial assistance and health insurance. 

No matter what the circumstances are, caring for a child with a heart defect is not an easy task. In addition to the emotional stress that is present, the financial pressures can be overwhelming. There is the prospect of lifetime care, the likelihood of increased medical bills, and often special equipment to properly care for your child. Fortunately, there are options for parents caring for a child with a heart defect. If you do not qualify for federal or state assistance programs, do know that there are resources available to parents for prescription assistance, financial assistance and health insurance assistance. Talk with the social services department at your child's hospital, your child's primary care physician, and your child's cardiologist.  The Congenital Heart Information Network Healthcare/Insurance Resource page is also an excellent source for parents and provides many links to resources.