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.

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!

Pick them up and put them down!

It's a proven fact that exercise improves your fitness level. If you have a CHD, that's important: Strengthening a damaged heart can make it work better, function longer, and be more resistant to shock if you happen to have a health crisis. In short, exercise can extend your life.

For any exercise to be effective, your heart and respiratory rate have to increase - safely! So be sure to consult your doctor before beginning any exercise program. If your doctor clears you for exercise, be sure to ask if he/she recommends a certain type of exercise. Be sure to start slowly and build your strength.

Music can make your exercise routine go by faster and keep you going when your body says "Wait a minute!" You also tend to move with the beat: faster music makes you work harder. Don't believe me? American Pie is a classic song, but just try to exercise to it. 500 Miles by The Proclaimers works much better!

This website will sell you "workout music" with faster or slower beats, depending on how intense you want to exercise. Or you can download your favorite MP3's. Either way, if your doctor approves, get out and get moving!

Links for CHD Families

Here are several very important links for you to read today. Read them online, download them, or print the file, whichever you choose. If you try to download the file as a .pdf document, you won't be able to... the writers are trying to protect their work, you can read the details on the download page. But you can print the entire file, which is just as good! The only bad thing is that these links are from medical journals, written by doctors for other doctors. It's almost 100% medical terminology, and you'll probably have to have an interpreter.

Tetralogy of Fallot (ToF) in a seven year old girl

Some thoughts on Tetralogy of Fallot (ToF) surgery

The Fontan Procedure... what's down the road?

This next link refers to the Glenn Shunt, and has a very good illustration. The illustration, however, is of the Classic Glenn Shunt, which was first used in the 1950's. The modern version, the Bi-directional Glenn Shunt, was first described in 1966 and not popular until the 1970's.

Click the .pdf button to be taken to a three page file concerning both versions of the Glenn Shunt. This is important reading for anyone who has a Glenn!

This link has more layers of information than a seven layer Chocolate Cake! Above the illustration, click the heading labeled "Contents"; there you can find 40+ links to heart defects, surgical procedures, and case studies. There is lots of information here, and not just on the Glenn Shunt.

Who We Are

So who are we?

We’re 1 out of every 120 people... there’s a new one of us every 14 minutes. We are both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and Heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we recovered.

We aren’t related by blood but we are a family. We call ourselves the Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We know that most of us shouldn’t even be here and so we live every moment as if it is our last. We’ve celebrated our victories and we’ve mourned our losses. Our heroes include a Flying Tomato, a golfer, and a former movie star, because we are them and they are us. Our parents are Heart Dads and Heart Moms, and we consider those titles as Badges of Honor. They deserve it; they were the first ones to discover that a heart defect doesn’t just break one heart... it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

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.

The Moral Obligation to Give Back

If you haven't yet subscribed to Adventures of a Funky Heart, (written by an adult CHD survivor and packed with humor and insight), I highly encourage you to peruse the interview he recently conducted with Amy Verstappen, President of the Adult Congenital Heart Association (ACHA) and a survivor of Congenitally Corrected Transposition of the Great Arteries. In her interview with Steve, Amy discusses her "moral obligation" to give back to the CHD community after her personal experiences as an adult survivor. Her personal story is an interesting one, but the action she has taken is nothing short of inspirational.

In the past year, the ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. Amy is actively involved in creating new legislation to bring much needed research and attention to CHD issues.

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says in the interview. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together...”.

Ms. Verstappen is determined to educate parents on the long-term needs of CHD patients. She tells Steve that she “...presented a pilot version of [a new brochure designed by ACHA specifically for parents] to a group of Heart Moms - all leaders of some of the advocacy groups for children - three of them told me that no one had ever told them that their child was going to need this level of care.” Amy goes on to describe some of the questions that parents of children with a heart defect should be asking.

I can tell you, as one of those moms who didn't know or understand the long term implications (I have a child with Transposition of the Greater Arteries who I was told was "fixed!"), that the information provided is valuable and too important not to take a moment to read.

I highly encourage you to take a minute and check out the latest entry at Adventures of a Funky Heart! Not only is it a great personal story of one of the movers and shakers of the CHD community, but it is also a great source of information for parents, teens and adults alike!

Real CHD Survivors on Reality TV!

GROWN UP “HEART KID” FEATURED ON SEASON FINALE OF LIFETIME TELEVISION’S HIT SERIES “HOW TO LOOK GOOD NAKED"

PHILADELPHIA – SEPTEMBER 04, 2008 – The Adult Congenital Heart Association (ACHA) announced today that congenital heart defect (CHD) survivor, Heather Magee, will be featured on the season finale of Lifetime Television’s hit series, “How To Look Good Naked,” airing September 9 at 10:00 PM EST.

Magee, a survivor of two childhood surgeries to correct a congenital heart defect that left her with only one working ventricle, the most recent of which was performed in October 2007, confronts her body image on the show in the wake of multiple scars, both physical from the incisions, and the mental impact of coping with a congenital heart defect as an adult.

“For almost twenty years I lived under a false sense of security that my heart condition was a childhood problem that was fixed long ago,” said Magee. “When I discovered four years ago that CHD is a lifelong struggle that requires ongoing care, it threw me for a tailspin. Not only did I suffer physically from my condition and the resulting corrective surgery, but mentally as well. I participated in ‘How To Look Good Naked’ both to raise my self esteem after a traumatic time in my life, and also to raise awareness among the millions of adults living with CHD that they must seek treatment for their condition if they aren’t already doing so.”

Approximately 1.8 million adults in the United States are living with congenital heart defects. Most, like Magee, underwent open-heart surgery as an infant or child, and drop out of special congenital heart care, as they believe themselves to be “fixed.” However, recent evidence shows that heart procedures performed on young children may weaken over time, leading to serious health complications as early as young adulthood.

Magee’s appearance on the season finale of “How To Look Good Naked” will do more than just increase awareness of congenital heart defects among the viewing audience, it will help raise the funds necessary to continue the ACHA’s mission. For the first time in the series’ history, the episode also served as a fundraiser. The show featured Magee and other adults living with CHD in a charity fashion show that raised $10,000, which will be divided between the ACHA and the Ahmanson/UCLA Adult Congenital Heart Disease Center (Ahmanson/UCLA ACHD Center), where Magee was treated for her condition.

More about the show can be found at Lifetime's website.

For More Information:

Anna Espe, Development Associate
Adult Congenital Heart Association
215-849-1260
aespe@achaheart.org

First Hearts United Conference held for HLHS families

PRLog (Press Release) Bloomington, MN, USA. Jun 23, 2008 -- The non-profit organization Hypoplastic Right Hearts held its first-ever medical and educational conference, Hearts United 2008, in Bloomington, MN June 18-21, 2008. Families with children born with hypoplastic right heart syndrome (HRHS) from around the US and Australia gathered to meet in person for the first time, and some families had never met another child in person with the same diagnosis.

The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen.

Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with CHDs that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.

For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org