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.

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.

Caring for and Empowering your Child

Ultimately, no one knows how to better care for your child than you do. As a parent, you have instincts, passion, and most of all love – all these things mean that you are perfectly capable of giving your child the best care possible. However, when you learn that your child has been diagnosed with a CHD, most parents can’t help but wonder, “How do I care for my child?” We all second-guess our parenting abilities from time to time, but when you have a child with extra needs, we may find ourselves second-guessing our actions even more. Here are some specific things that parents of children with a CHD should consider when providing care for their children.

Although many of the day-to-day tasks such as special feedings, looking out for signs of problems or complications, or administering medicines actually become like second nature and relatively “easy” over time, other issues within the realm of caring for our children are what cause us to doubt ourselves. One of these issues involves how to treat our children when it comes to addressing their illness. Whether your child is diagnosed with a CHD in infancy or later in childhood, you’ll have to explain to him or her things such as why they have a surgical scar, why they need to visit the doctor/hospital more frequently than some other children, why they must take medication every day, etc. Many parents think they can’t handle or shouldn’t address these issues; however, it is by addressing these issues and having these types of discussions with your child that makes your care for them even that much better.

Besides communicating with and educating your child, the main advice that numerous child psychologists and doctors will give regarding this issue is to encourage your child to become involved in their own care (when/if they are emotionally and physically able of course). This makes children feel much more confident and in control – children will most likely think, “Wow, if Mommy and Daddy trust me to take care of myself I must be doing great!” It’s a great tool to empower your child and yourself. Depending on the level of care your child requires, the doctor or other members of the medical team can give you specific instructions regarding how to incorporate your child in the caretaking process. And at the end of the day, involving your child in their own caregiving is the best way you as their parent can care for them as well.

Keeping the Balance amongst Siblings

It’s one of those challenges that all families affected by a Congenital Heart Defects (CHD) face…how to keep the balance amongst siblings. There are so many issues that come into play when considering how to treat your children who are not afflicted with a CHD. There’s a fine line – you don’t want to burden them with too many responsibilities or make them feel less important, yet you also don’t want to spoil them to overcompensate for the fact that so much attention is paid to their ill sibling. How do you handle it? Where do you turn for advice? We’ve compiled some tips and advice that was gathered from other parents, online resources, as well as publications by child psychologists.

· While it is very important that all siblings be informed about your family’s specific CHD situation, it’s important to set an example that it’s not something we have to dwell on every day. All children want to live as normal a life as possible. So, by educating your children about CHD rather than making it a daily focus, you’ll be off to a great start in establishing a balance amongst your children and your entire family as well.

· Allow your children who do not have a CHD to choose a specific responsibility in order to empower them. This will let them know that you value their help yet you won’t be burdening them with too many expectations. For example, maybe a sibling can simply be a reading buddy for your child with a CHD.

· Remember to let all your children know how much you appreciate their help. If they happen to be too young to actually be of any significant help at the moment, you can always tell them how much you appreciate their understanding and patience when you have to assist or focus on their sibling who is sick.

· Although it can be tempting for many parents, avoid spoiling your other children in an effort to make up for the attention you feel you’re giving your child with a CHD. Spoiling them can include giving an abundance of material items, too much attention, or even treating them with kid gloves as though they’re too fragile to handle your family’s situation. They will grow up with a sense of entitlement or even resentment. Kids are smart – they will eventually realize why you’re spoiling them and will in many cases feel like they didn’t truly earn the things you gave them or the over-attentiveness you showed them.

· Encourage your children to express their feelings. Talking can be such a powerful tool when it comes to children. It doesn’t matter their age – you can always adjust your conversations by using developmentally appropriate language to answer their questions or respond to their statements. Be truthful yet simple and to the point with your children. One story we came across involved an older sibling who asked why his little brother was sick; he thought he did something wrong. In this situation, it was suggested that the parents have a real conversation with explanations that were simple and truthful. For example, you might say “You didn’t do anything wrong; your brother just has a special heart. We’re all special in our own ways.” Sometimes, it may seem impossible to discuss CHD related topics with your children; however, it’s much wiser to at least let them know you heard them and are willing to try a discussion rather than simply changing the subject.

At the end of each day, this whole issue does tend to feel like quite the balancing act. However, it is so important to make a conscious effort to remember to think about how you’re treating all your children. Do they feel equally important? Is one child feeling neglected or perhaps, on the other hand, that you’re actually being over-attentive to him/her? These are questions we can stop and ask ourselves each day to try to keep that balance and ensure that our children sense that balance amongst their sibling relationships.

Never Give Up

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Excerpted from Maria Cheng, Ap Medical Writer – Tue Jul 14, 12:40 am ET

In 1994, when Hannah Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs as well. To avoid a risky heart/lung transplant, doctors took a chance at a new and novel idea.

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Great News: Scientists ID'd Heart Stem Cells!

Source: Constance Holden, ScienceNOW Daily News
2 July 2009

I was thrilled to read today that scientists have finally identified the cardiac stem cells that create all of the major cell types in the human heart. In recent years, scientists identified these cells in embryotic mice, but now a team at the Massachusetts General Hospital in Boston have found these same cells (that express the protein Islet 1) in humans. The team reports its work in Nature.

What does this mean? That researchers are one step closer to creating new cardiac stem cells in the heart's major cell types: heart muscle (cardiomyocytes), smooth muscle, and blood vessel lining (endothelium).

Chien, the researcher who made this astounding discovery, cautions that these primordial stem cells could not be used for therapy because they could develop into undesired cell types, but they could be used for disease modeling and drug screening and - most importantly to those of us affected by CHD - further research on congenital heart malformations. Chien speculates that CHD's "may be a stem cell disease" because Islet 1 cells are clustered in areas that are "hot spots" for heart defects.

The future I hope it holds for us? The possibility of growing human "heart parts" (such as strips of muscle or a valve) to assist CHD survivors.

Physical Restriction after Fontan: How do You Know?

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Stem Cells: What Does it Mean for Us?

By now you've likely heard the news - Obama has lifted the ban on stem cell research, which will open the way for many new lines of embryonic stem cells. It's controversial to many, but what does it REALLY mean in terms of research and innovation for the creation of heart tissue?

First, let's clarify what, exactly, embryonic stem cells are. Human embryonic stem cells are our body's most versatile cells, possessing the potential to develop into any cell type in our bodies (with the exception of a placenta). Already such cells have been used to form heart tissues and valves. Embryonic stem cells are created during in vitro fertilization for persons with reproductive issues. Blastocysts are formed, from which the cells are harvested. The permission of the donors are given to donate these cells for research. Only 21 lines of these cells have been researched since 2001, due to a ban Bush placed on further research beyond the existing lines.

In a press release dated March 9, the International Society for Stem Cell Research (ISSCR) applauds President Barack Obama’s executive order, citing its potential to relieve suffering caused by diseases and conditions (including those caused by heart defects). The new policy allows scientists to utilize the many hundreds of valuable lines created since 2001, and relieves them from the substantial hurdles in duplicating equipment and other resources in order to separate privately- or state-funded stem cell research from federal government-funded efforts.

It's a hot topic most of us don't want to discuss in public. But it's a discussion we need to have. What do you think? Does the announcement restore the "integrity to the relationship between politics and science that has been traditional in the U.S.,” as asserted by Irving Weissman, President-Elect of the ISSCR? Would you be a willing recipient of the tissues and valves created in this manner?

Inspiration

There's a great new blog out there by Teri Martin, an adult CHD survivor... Inspiring Hearts. Teri's personal blog, Finding Inspiration Every Day has often been a source of solace for me during stressful work days - she lists simple things she loves, reasons to be happy, tidbits of her life. And her art work is amazing. She says her art is a direct result of her CHD - while other children played sports that were not an option for her, she pursued art - and is thankful for her gift. (Some of her art is featured in this post - more can be found on her Etsy site!)

Here's Teri's story, and an introduction to the wonderful things she's doing to spread awareness, create cohesion in the CHD community between the generations of survivors and to infuse others with hope, creativity and a passion for life.

Inspiring Hearts
by Teri Martin

If I had to pick a word that summed up my life's motivation, it would be inspiration. I was born with Hypoplastic Right Heart Syndrome PA/IVS with moderate TA. Being one of the oldest survivors of this complex disease, I never really knew many people with CHD growing up. So I focused on what inspired me to get through a lot of the hard times as a child and teenager. I could not go play on the playground when it was too cold or too hot, let alone try a sport. So I spent hours creating art and writing. Even as a kid, every time I was depressed I would bury myself into things that inspired me to be something more. My mother would probably say I had a very active imagination.

It wasn't until college where I really met people like me who had CHD. Still, back in college information was scarce, what I could find on the internet didn't make much sense unless you went to medical school. It wasn't until years after I graduated, that I learned about CHD associations like the ACHA. I was a bit hesitant to join, but I eventually I did, when I thought it was best to seek advice from those who could understand me and know what I have been through. So this past May, I went to my first conference, mostly to learn the information that was to be presented to us, but I walked away from the conference with much different objective. I wanted to learn my new friend's stories. The best times I had at the conference where the times we just sat down and shared our lives with each other.

I left the conference inspired to help others. When I returned home I kept thinking that there wasn't any place where we could really share what we have been through. The ACHA message board is great, but was more geared to talking about medical issues which is a great thing, when you want advice, need to vent your frustrations, or just want a friend to listen to you.

While I was at the conference some mothers were there who had young children and they asked us so many questions. When I got home I would have daily emails from parents, and teenagers asking me a lot of the same questions I was asked at the conference. So, as 2009 approached, I drew from something I already loved to do and had been doing for a few years already; I started another blog.

I started off by asking different parents CHD groups to send me questions, I also asked my fellow survivors what questions they think are important to answer. After I had gathered my question I went to my fellow ACHA'ers and asked them to volunteer to answer these questions and tell their stories. The response was overwhelming! Some of these questions are really hard to answer so it takes time, but each week I have gotten back at least one person responses, and I hope to have more in the months to come.

So in January I took my favorite word inspiration and named my blog "Inspiring Hearts," Living with Congenital Heart Disease: These are Our Stories. I want this blog to be a place where adults with Congenital Heart Disease are able to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.

Thank you, Teri, for all you are doing for the CHD community, your peers and the generations of survivors to come. You are, truly, an inspiration!

Tomorrow's a Big Day!

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network, kentuckianalefthearts.com.

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!