Transitioning - why is it so difficult?

More children with congenital heart disease are living to adulthood. The result of this is a large rise in the adult congenital heart disease (ACHD) population. Pediatric cardiologists are trained in congenital heart disease, therefore understand the anatomy and special needs of children born with heart defects. Adult cardiologists receive little or no training in congenital heart disease, therefore often do not understand the anatomy and concerns of adults born with heart defects. As patients with congenital heart disease become adults, they may develop new problems and should continue to be followed by a congenital heart specialist to keep their heart healthy. Across the United States, less than 10% of ACHD patients are receiving the recommended cardiac care. There are many reasons for this, including:

• In some hospitals, pediatric cardiologists are not allowed to care for patients over the age of 18
• Patients do not continue with follow-up care
• Lack of education about their heart defect
• Belief they are “fixed” or “cured”
• No longer “want to deal with heart disease”
• A perceived lack of cardiac symptoms
• Transportation issues
• Insurance barriers
• Financial issues
• Relocation
• Unsure how to find a new congenital heart specialist

Here is a website designed for young people to use to help make the transition.
 https://iheartchange.org/welcome.aspx?ReturnUrl=%2f

Healthy and Often Left Out

I am proud to work in an organization which allows siblings of all ages (as long as they are healthy) to visit their brother or sister in the cardiac intensive care unit. These siblings have many of the same concerns as their parents regarding their brother's or sister's condition and how it will affect them and their entire family such as;  isolation, a need for information, guilt, and concerns about the future. If this weren't bad enough, they also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve. Even the most family-friendly organizations often overlook the siblings.  They are often left in the literal and figurative waiting rooms and when they are included, it is often to watch the celebrations around the steps to recovery of their brother or sister while their own milestones are achieved on a very lonely road. Here are some ways to help keep a sibling or siblings feeling like they truly are a part of the family.

• Acknowledge their life
• Acknowledge their concerns, let them ask questions of health care providers
• Expect typical sibling behavior despite their brother's or sister's condition (name calling, rivalry, fighting etc)
• Discuss roles and expectations
• Give them opportunities to meet other kids as well as other siblings of kids with the same condition
• Communicate and keep them in the loop (age appropriate)
• Celebrate every child's achievements and milestones
• Find resources and ways to give them a break as well
• If they want, Include them in any special activities that are meant for their brother or sister (camps, fundraisers, etc.), give them a choice, let them NOT participate as well

There is no place like home!

This is the end of week one working with my new group of people in my new state of residence. No matter where you go or what you do, it never ceases to amaze me how resilient children are and how fast they bounce back. It amazes me that we can perform an open heart surgery and they are ready to go home after spending a couple nights in the hospital. The process is so very hard on the families, so much worry, feeling helpless having us take their child, having to let go, and wanting to be able to do something. It is so great to tell them they can go home. A bit of relief and then a bit more worry. But no matter who you are or where you go there is nothing that feels so great as to be able to go home to your own bed! As Dorthy said, "There is no place like home." 

                    

Resources for Congenital Heart Defects

Many organizations are committed to understanding more about congenital heart defects and providing helpful resources for families and healthcare providers. Here are some useful resources for anyone living with congenital heart defects.

Adult Congenital Heart Association  http://www.achaheart.org/
Adult Congenital Heart Association is a national organization providing education and support services for adults with congenital heart defects and their families. They are focused on the long-term needs of adults with congenital heart defects, providing education, outreach, and advocacy.

American Academy of Pediatrics http://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/PEHDIC/Pages/Newborn-Screening-for-CCHD.aspx
The American Academy of Pediatrics (AAP) is a an organization of 60,000 pediatricians dedicated to the physical, mental, and social health of infants, children, adolescents and young adults. The AAP provides recommendations and clinical guidance regarding a number of topics in pediatric health care, including answering questions pediatricians may have about pulse oximetry screening for critical congenital heart defects.

American College of Cardiology   http://www.cardiosource.org/
The American College of Cardiology (ACC), a nonprofit medical society, is dedicated to enhancing the lives of cardiovascular patients through continuous quality improvement, patient-centered care, payment innovation and professionalism. The ACC provides professional education and operates national registries for the measurement and improvement of quality care.

American Heart Association http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/Congenital-Heart-Defects_UCM_001090_SubHomePage.jsp
The American Heart Association offers information about the effects of and risk for congenital heart defects, as well as symptoms and treatment for children with congenital heart defects. This website also offers information about specific types of congenital heart defects.

Baby’s First Test   http://www.babysfirsttest.org/
Baby’s First Test is a resource designed for expecting and new parents to learn about newborn screening.  It also has resources to educate health professionals, other industry representatives and members of the public about newborn screening for different conditions, including congenital heart defects.

Children’s Heart Association http://heartchild.info/web/
The Children's Heart Association (formerly The Association for Children with Heart Disorders) is a support group run by families and friends of children with a heart defect for families with, or who have had, children with heart disorders.

Children’s Heart Foundation http://www.childrensheartfoundation.org/
The Children’s Heart Foundation works to understanding congenital heart defects by funding research to advance the diagnosis, treatment and prevention of congenital heart defects.

Congenital Heart Information Network http://tchin.org/default.aspx
The Congenital Heart Information Network is a national organization providing education, support services, and financial assistance resources. It helps families of children with a congenital heart defect or acquired heart disease, as well as adults living with a congenital heart defect.

Congenital Heart Public Health Consortium http://chphc.org/hostedsites/Pages/default.aspx
CDC provides technical assistance to the Congenital Heart Public Health Consortium, a unique collaboration that brings together families, experts, and organizations to address congenital heart defects through surveillance, research, education, health promotion, and policy development.

Cove Point Foundation: Congenital Heart Disease http://pted.org/?id=list#1
This website is an in-depth resource on congenital heart defects. It offers information about specific types of congenital heart defects, including descriptions of the defects, treatments, and links to other resources.

It’s My Heart http://www.itsmyheart.org/
It’s My Heart is a non-profit organization that provides support to and advocates for those affected by Acquired and Congenital Heart Defects (CHD). It aims to increase awareness about CHD, provide resources and education, and create alliances and networks among families, groups, hospitals, and the community.

Kid’s With Heart http://kidswithheart.org/
Kid’s With Heart is an organization devoted to providing support for children and families affected by congenital heart defects. It provides parent-matching, online support, bereavement services, awareness products, and educational resources.

Little Hearts, Inc. https://www.littlehearts.org/Default.asp
Little Hearts, Inc. is a national organization providing emotional support, education, resources, parent networking, and hope to families affected by congenital heart defects. Support services consist of parent matching, discussion board, quarterly newsletters, and our popular "Stories of Hope". Membership consists of families who have or are expecting a child with a CHD.

March of Dimes http://www.marchofdimes.org/baby/congenital-heart-defects.aspx
The March of Dimes is a national organization focused on helping babies to be born healthy. Its website offers a brief overview of congenital heart defects, provides descriptions for some specific defects, and directs readers to additional resources.

Mended Hearts http://mendedhearts.org/
Mended Hearts provides support for heart disease patients, their families and caregivers, by facilitating a positive patient-care experience. Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums.

Mended Little Hearts http://mendedlittlehearts.org/mlh.htm
Mended Little Hearts is part of the Mended Hearts organizations and was established in 2004. They provide support to children with congenital heart defects and their families. Its website provides ways for families of “the littlest heart patients of all” to come together through support group meetings and visiting programs.

National Heart Lung and Blood Institute http://www.nhlbi.nih.gov/health/health-topics/topics/chd/
The National Heart, Lung, and Blood Institute features an overview on congenital heart defects. It includes information on how the heart works, types of defects, causes, signs and symptoms, diagnosis, treatment, issues related to living with a congenital heart defect, and clinical trials.

Pediatric Congenital Heart Association http://conqueringchd.org/
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They are founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy, to reduce the impact of congenital heart disease while striving to realize a world free from it.

Here is your chance teachers

After looking through a number of congenital heart defect blog sites, I have decided that this blog will serve to chronicle my time working with children and families living with congenital heart defects. I must say, as a healthcare provider, the one thing I have come to learn is to always listen to the family members instincts and hunches. There is no one better to know when something is wrong than a loving, caring, and attentive parent/family member.

I have seen the many blogs of parents whose child has a congenital heart defect but I have never heard what it is like for a teacher to have their student return after cardiac surgery. The technology today allows for a child's return to school rather quickly. The schools often see more of our children than we as parents are able to see. So here is your chance to express how you feel about how and when these students return.

As an educator, how do you prepare for any student who returns after a serious surgery?
Do you feel there is enough/any communication between the healthcare team and you and the school? Would you know what to look for or would you know when something just isn't right?
What would you do if you noticed something wrong?
Do you feel that you are adequately prepared and have the necessary resources to help a child with a health problem?
Do you have registered nurses in your school?
What would you like the healthcare community to do to make these transitions better?

Introduction to Congenital Heart Defects

A congenital heart defect means it was present at birth (congenital) and it is an abnormality of the heart or blood vessels near the heart that don't develop normally before birth. In most cases, it is unknown what caused the defect. Some known things that can interfere with the developing baby's heart can include; German measles (rubella), viral diseases, maternal diseases (diabetes, phenylketonuria or PKU, seizure disorders,  and lupus), heredity, chromosome abnormalities (Down syndrome, trisomy 18 and trisomy 13, Turner's syndrome, Cri du chat syndrome, Wolf-Hirshhorn syndrome, DiGeorge syndrome or deletion 22q11), single gene defects (Marfan syndrome, Smith-Lemli-Opitz syndrome, Ellis-van Creveld, Holt-Oram syndrome, Noonan syndrom, Mucopolysaccharidoses), and other syndromes (Goldenhar syndrome or hemifacial microsomia, William's syndrome, and the VACTERL association which is tracheal and esophageal malformations associated with vertebral, anorectal, cardiac, renal, radial, and limb abnormalities make up the VACTERL syndrome), prescription and over-the-counter medications, street drugs, and alcohol. According to the American Heart Association at least 8 of every 1,000 baby's born (about 1%) have a heart defect and in the US about 40,000 are born each year. Sometimes the defect is mild and the baby shows no obvious symptoms and sometimes the baby is critically ill. Most critical defects are found prenatally or as a newborn.
Here are some resources for further information.
http://www.heart.org/HEARTORG/
http://www.mayoclinic.com
http://www.heart.org
http://www.childrensheartfoundation.org
http://pediheart.org

Why did I call This Love Lines?

I know it sounds like a dating service but I called this blog Love Lines because of a patient. I was a nursing student rooming a patient and getting vital signs. The little boy did not want to take off his shirt because he was embarrassed about his median sternotomy scar. I told him what I saw was a love line and all the people who love and care for him. I did get a little smile from him that day. This was the beginning of my career with those who have congenital heart defects (CHD).