Preparing your Child’s School for His or Her Special Needs

Although the school year has already begun, it’s never too late (or early) to think about what your child’s school needs to know regarding his or her special CHD situation. And any time is a good time to consider what information you should provide to your child’s school so they can better care for and support your child.

For starters, it’s always a good first step to schedule a face-to-face meeting with important school faculty members (nurse, principal, counselor, classroom teacher, etc.). This will help all individuals be able to put a face with a name and to get to know your personalities, expectations, and concerns in a personal yet professional setting. Printing off some general information/facts about your child’s specific CHD to take to this meeting is always advised. Copies should be given to at least the nurse and classroom teacher. If your child’s condition is severe enough that it will require a special needs counselor, then of course the counselor will benefit from the information sheet as well. During your discussion you should inform all pertinent faculty members of several issues. One issue being your child’s possible learning/developmental problems. Since some children with CHDs can develop learning delays or problems, let the teacher know you’d like to be made aware of any signs of concerns the teacher may have during the school year. That way you can address the concern with your child’s doctor and get his or her recommendations. Another issue to discuss deals with your child’s general health; since children with CHDs can be at a higher risk of contracting certain infections, ask the teacher to notify you if other children are sick. Also regarding general health, the teacher (especially the physical education teacher) should be made aware that your child may require more rest or may be prone to tiring more easily. There’s also the important issue of the medical care that your child may need throughout the day (medications, procedures, etc.); in these cases, the nurse and teacher should obviously be well informed about the specifics – your child’s doctor would undoubtedly supply you with information/handouts explaining your child’s medical needs that could be given to the nurse. An important (if not the most important) issue that most parents want to impress upon their child’s school is that their child is a regular kid…they should be treated as such. It’s important to let your child’s school know your desire to have your child feel “normal” and included like every other child.

Overall, it’s important to remember that while some children’s CHDs are relatively simple and may not require any special care at school, other children may need regular intervention and attention from school faculty members. So, it’s imperative that parents evaluate (especially with their child’s doctor) what exactly the school needs to know.

Carrying the fight to the enemy

175+ people affected by Congenital Heart Defects (CHDs) attended Lobby Day 2009 in Washington, DC! The attendees were CHD Survivors, their family members, and their cardiologists. Brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care.

After a briefing/training session, attendees were split into groups by geographic location and sent to meet with their Senator or Representative. Steve didn't lobby, but stayed in contact with the groups via telephone and Twitter and blogged the event. His contacts reported fourteen congressional visits, with a high majority of them receiving a positive or very positive reaction. And obviously, those were only a fraction of the total number of visits.

Steve had personally been worried that the vote on the Stimulus bill that was occurring in the Senate would be a "distraction" from our promoting the Congenital Heart Futures Act. It may have been; we will never know. But Lobby Day had been scheduled many months in advance and just happened to fall on the same day as the vote; the only thing that could be done was to work around it.

Although from different groups with varying levels of lobbying experience, our lobbyists meshed quickly and worked together as a team. After all, we have a common enemy: Congenital Heart Defects are the #1 birth defect. A new CHD is detected (diagnosed either at birth or later in life) every 14 minutes! So in the ten hours of Lobby Day 2009, there were 42 NEW cases of a Congenital Heart Defect reported.

The Congenital Heart Futures Act will ensure that their life experience with CHD will be vastly different than ours. That's why this fight is so important.

It works better when you work together!

It’s hopeless.

We can’t do anything.

That is what parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS) were told not many years ago. The word Hypoplastic means “underdeveloped”, and that is exactly what has happened: the heart’s Left Ventricle is much too small to pump blood to the body. The hypoplasia extends much further than the Ventricle; the Aortic and Mitral valves are tiny (or nonexistent), and the Aorta itself is tiny. The child is alive only because of a Patent ductus arteriosus, a “built in” heart defect everyone is born with.

The Ductus Arteriosus is a small connection between the Pulmonary Artery and the Aorta that allows the heart to function while still in the womb. Once the child is born, the connection will close by itself, usually in less than two weeks. A connection that is “stuck open” — a Patent ductus arteriosus — is easily corrected. But in this case, when the ductus closes, blood flow drops and the child goes into shock.

HLHS was the defect the doctors had no answer for. Obviously, a surgical repair was the only option, but how? How do you fix a heart that is, for all intents and purposes, missing the left half? A heart transplant was an option, but rarely was an infant’s heart available, and there was almost no time to find one.

But in the early 1980’s the answer came. Rather than try to fix everything at once, make the repair in stages. Three operations, (known collectively as the Norwood Procedure) performed in sequence, allowed the child to survive. Certainly it was understood that this wasn’t a cure, but the child could live if he or she received lifelong medical care.

Fast forward to 2009. The first generation of HLHS survivors are now in their early to mid 20’s. And with no older survivors, no one has any idea what future health problems may affect them. Like Edmund Hillary climbing Everest, no one’s been here before, and no one has a clue what's ahead.

The CHD Blog and Adventures of a Funky Heart will both be in Washington, DC on February 10, 2009 to support the National Congenital Heart Coalition (NCHC) effort to create a national registry of patients with heart defects. The NCHC is made up of several different CHD organizations, working together for the first time. The American College of Cardiology, the Adult Congenital Heart Association, It's My Heart, the Congenital Heart Information Network, Mended Little Hearts, and the Children's Heart Foundation have all come together to work for this important cause. (The group information is taken from the cover of the informational packet that was mailed to attendees; there may have been more groups that have joined the effort since then!)

If data is gathered about those of us living with a Congenital Heart Defect right now, it could be analyzed and used to predict our future health care needs. It can also be used to make things a little easier for the next generation of CHD patients. As an example, I take 11 different medications. Yes that is a lot, but some CHD’ers take more, and some take less. If the knowledge gained from a national registry could eliminate one medication that each of us has to take, the savings would be phenomenal.

Much too often you read in your local newspaper about the child who needs surgery for a major heart defect (Infant Survives Heart Surgery, reads the title of the one and only article about me in the local Daily Planet) but what happens after that? Usually you don't see a follow up article in the local press. But Cardiac Kids grow up; we get jobs, pay our taxes, fall in love…

... In other words, we live our lives.

Become a CHD Advocate!

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.