Life as a Teenager with Hypoplastic Left Heart Syndrome

As a heart mom of a pre-teen with Hypoplastic Left Heart Syndrome, I often think about the difficulties teenagers face as they are thrust into their changing world.  I worry about the dangers out there; drugs, alcohol, risky behavior. I worry about bullying, social groups and the need for all teenagers to "fit in."  What about the challenge of sports or other extracurricular activities?  Will our HLHSrs face more difficulties because of their heart condition?  There isn't a manual about this. Our kids do not come with a How-To guide. There are studies that demonstrate decreased exercise performance as children become older, but I have read so many wonderful stories about teenagers living very happy, normal lives. I have many more questions and there is so little data out there on teenagers with HLHS. I do know that our children are breaking the mold and someday the data will catch up with them. In the meanwhile, the best data comes from those who tell the stories best - young adults with HLHS - the warriors!  I have been blessed to meet a great group of those heart warriors!

Over the years I have met several really neat teenagers with HLHS and they offer such inspiration to us heart parents!  It's hard to believe these teenagers are grown up and young adults now; they are out in the world living their lives and doing amazing things!  One young lady in particular who has been such an inspiration to me and many other heart families is Megan Broucek. Megan shares stories of her life as a teenager; her trials and tributes, and does so with such a great perspective. Meagan, like many other young adults with HLHS are happy to answer questions and share their stories so I encourage you to read her stories of life as teenager on her Facebook page: Meagan Broucek's Facebook Page.


My very best to you and your families,

Julie

We Are Not Alone in this Fight...

Whether your child is 2 months old, 2 years old, or 12 years old, dealing with a serious heart defect like Hypoplastic Left Heart Syndrome can be overwhelming; you don't have to go it alone. A support group can help, and through the internet and social media today there are so many opportunities to reach out for that support.

Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful just talking with other people who are in the same boat. While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope.

Understanding support groups

Support groups also come in a variety of formats, including in person, on the Internet or by telephone. They may be led by professionals — such as a nurse, social worker or psychologist — or by parents. Some groups are educational and structured. For example, the group leader may invite a doctor, psychologist, nurse or social worker to talk about a topic related to the group's needs. Other support groups emphasize emotional support and shared experiences.

Benefits of support groups

Regardless of format, in a support group you'll find people with problems similar to yours. Members of a support group typically share their personal experiences and offer one another emotional comfort and moral support. They may also offer practical advice and tips to help you cope with your situation. There are many benefits of participating in support groups:

• ·         Feeling less lonely or isolated
• ·         Gaining a sense of empowerment and control
• ·         Improving your coping skills and sense of adjustment
• ·         Talking openly and honestly about your feelings
• ·         Reducing stress or anxiety
• ·         Developing a clearer understanding of what to expect when caring for your child
• ·         Comparing notes about resources, such as doctors and treatment centers

Finding a support group

• ·         Ask your doctor or other health care provider for assistance. Your doctor, nurse, or social worker may be able to recommend a support group for you.
• ·         Look in your local telephone book or check your newspaper for a listing of support resources. Community centers, libraries, or religious institutions may also be able to recommend a support group for you.
• ·         Search the Internet. Online support groups are available as email lists, newsgroups, chat rooms, blogs and social networking sites like Facebook, Twitter and Pinterest. A search on Facebook will provide a great number of local and national groups that provide support to parents of children with HLHS.  

The life of a parent of a child with Hypoplastic left heart is blessed, as our children are strong, unique, and wondrous; but oftentimes it may also be filled with fear, anxiety and isolation. Reach out for support if you need it. I have found that it’s usually just a phone call or a click away.

Best Wishes for a happy holiday and may you have joy and peace in the years to come,

Julie    

I Love February...

Because February 7 -14 is Congenital Heart Awareness Week!

How will you celebrate Congenital Heart Awareness Week?

There are many ways you can help promote Heart Health:

Wear RED!

Sign up for a Congenital Heart Walk

Donate items for care bags for families with children in the hospital

Call your local radio station and ask them to announce CHD Awareness week.

Compose a brief newsletter with CHD facts and send it to all of your Email contacts.

Tweet to all of your followers.

Create a personal fundraising page for your favorite heart organization

Go to your Facebook page, change your profile picture to a CHD symbol and Post a message about CHD. 

Join a group like Mended Little Hearts or the Congenital Heart Network

Mail Valentines Cards with a CHD sticker to all of your friends, family, and neighbors.  

Surprise someone by sending them an eCard

Participate in a Research Study at your heart hospital. Research is vital in learning about heart defects and heart disease.

Talk to anyone who will listen and tell them what you know about CHD’s.  

Share your personal CHD story – Go ahead – You’ve Earned It!

Ask your local girl scouts or boy scouts to make a heart craft and earn a heart badge.

Cook heart healthy dinners all week.

Post a Blog on your website about CHD.

Make a Donation to your favorite "heart" organization. 

Give blood! There are many drives scheduled in your area during CHD week. 

Organize your own blood drive. Blood is a precious commodity to those having heart surgery.

Visit Mended Little Hearts for great CHD Awareness information! 

CHD Facts

What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.

Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

How serious is a heart problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.

Are things improving for those diagnosed with a CHD? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

There are so many things we can all do to raise awareness.  Most people don’t know that congenital heart defects are the most common defects in the United States. An estimated 1 in 40,000 babies - 1 in every 100 infants, are born with a CHD and some are not diagnosed until years after birth.

It’s going to be an exciting week – so get out there and

let’s help spread that awareness!

ProjectAdam - Saving Lives

October is National Sudden Cardiac Arrest Awareness Month. Project ADAM (Automated Defibrillators in Adam’s Memory) announced this month that 62 lives have been saved since the program was founded in 1999.

Project ADAM is a Children’s Hospital of Wisconsin program that helps schools throughout the nation prepare for and respond to cardiac emergencies. The program was created in honor of Adam Lemel, a 17-year-old Whitefish Bay, Wis., high school student who collapsed and died while playing basketball. Project ADAM has chapters in Alabama, Illinois, Florida, Georgia,Pennsylvania, Tennessee, Texas, and Washington.

Please read the complete story on the Children's Hospital of Wisconsin ProjectAdam Home Page. 

New Database For Children With Special Health Care Needs Provides Lifesaving Details To Emergency Responders!

PARENTS OF CHILDREN AND YOUTH WITH SPECIAL NEEDS:

Do you have a plan for a medical emergency?

A medical emergency can happen anywhere, at any time - and every second counts. Make an emergency plan for your child today!

The Patient at Risk Program is a free, web-accessible database for Emergency Information Forms (EIFs) for patients and families across Wisconsin. Patient at Risk gives emergency medical providers fast access to information about your child's health:

• Health problems or conditions
• Current medications
• Special care instructions including hospital preferences
• Contact information for your child's physicians

Find out more today! Patient at Risk is now on Facebook.

• Enroll Now
• Patient at Risk Brochure

More information for: Emergency Medical Services

More information for: Parents and Caregivers

More information for: Medical Providers

• Sample Emergency Information Form (EIF)

• Website User Guide

Back to School 2012...Evaluations for Neurodevelopmental Issues

The American Heart Association recently published a scientific statement in the journal Circulation stating that children born with congenital heart defects have an increased risk for development disorders.  "Children with congenital heart disease deemed high-risk, periodic re-evaluation for developmental disorders is recommended throughout infancy and childhood at 12 to 24 months, 3 to 5 years and 11-12 years of age."   Researchers at the Children's Hospital of Philadelphia state that nearly half of children born with a complex congenital heart defect experience neurodevelopmental problems, such as impaired fine motor skills and learning difficulties with nearly 30 percent having attention deficit hyperactivity disorder (ADHD). CHOP's Neurocardiac Research Group is examining this occurrence in children with CHD and investigating what the best therapies are and what can be done for prevention in the future. The Mended Little Hearts Organization is hosting an informative webinar on Neurodevelopmental Issues and CHD on Friday, September 7, 2012 at 3pm EST.  Visit Mended Little Hearts to sign up for this free webinar. 

It's About Time

When I look back over the past year, I am sweetly reminded that we have reached another milestone – Carter has a birthday tomorrow, he will be 8 years old. The memories of those many weeks in the Cardiac Intensive Care Unit for each surgery have slowly receded in my mind; not forgotten, but now just a vague cloudy recollection of a time best left in the past. Today I focus on the smart, lovable boy who loves to play soccer, loves his hermit crabs, loves to read and loves to play video games.  

Over the past year I have connected with many parents of children with HLHS. Everyone says the same thing – We wouldn’t have it any other way, I wouldn’t change a thing.  I understand this, I really do, but parents in the future will have options we never had – fetal intervention and gene therapy.  And someday, just maybe, HLHS will not be the most common cause of death from cardiac defects in infants.

I'm Seeing Red!

CHD Awareness Week February 7-14!

How will you spread the word?

Maybe you don't have the time to organize a heart walk or a health fair or school presentation - but here are a few ideas that only take a few minutes and some of them can even be done waiting in line at the grocery store! 

• Wear red!
• Call your local radio station and ask them to announce CHD Awareness week.
• Compose a brief newsletter with CHD facts and send it to all of your Email contacts.
• Tweet to all of your followers.
• Go to your Facebook page, change your profile picture to a CHD symbol and Post a message about CHD. 
• Join a group like Mended Little Hearts, the Congenital Heart Network
• Mail Valentines Cards with a CHD sticker to all of your friends, family, and neighbors.  
• Talk to anyone who will listen and tell them what you know about CHD’s.  
• Share your personal CHD story – Go ahead – You’ve Earned It!
• Ask your local girl scouts or boy scouts to make a heart craft and earn a heart badge.
• Cook a heart healthy dinner – All Week.
• Post a Blog on your website about CHD.
• Make a Donation to your favorite "heart" organization. 
• Give blood! There are many drives scheduled in your area during CHD week. 
• Organize your own blood drive. Blood is a precious commodity to those having heart surgery.

 CHD Facts

1. What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
2. Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
3. How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
4. Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
5. How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
6. How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
7. Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

There are so many things we can all do to raise awareness.  Most people don’t know that congenital heart defects are the most common defects in the United States. An estimated 1 in 40,000 babies - 1 in every 100 infants, are born with a CHD and some are not diagnosed until years after birth.

Let’s help spread that awareness.