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!