How to Prepare a Child For Heart Surgery

Prepare A Child for SurgeryPreparing your child for heart surgery requires open communication and a loving and attentive ear. The idea of having surgery can be a scary time for a child. Helping them get ready is an important part of the process. 

Read more: How to Prepare a Child For Heart Surgery

Types of Heart Defects in Children and How They're Diagnosed

The most common types of birth defects involve the heart. In the U.S., more than 35,000 babies greet the world afflicted by congenital heart defects, affecting approximately eight out of every 1,000.

pediatric-heart-defectsIt’s unclear what causes most of these defects, but genetics seem often to play a part, as well as fetal exposure to adverse environmental conditions, such as if the mother smokes or takes certain types of medications. Defects tend to develop early in pregnancy, as major heart arteries and blood vessels are forming.

Read more: Types of Heart Defects in Children and How They're Diagnosed

An Overview of PA/VSD

child heart healthby Peter Chang, D.O.

Pulmonary atresia with a ventricular septal defect (PA/VSD) is the most severe form of tetralogy of Fallot. A large ventricular septal defect is present, and only one artery comes off the heart. This artery, called the aorta, supplies blood to both the lungs and the body.  

In babies with PA/VSD, the pulmonary valve never developed, so blood gets to the lungs from the aorta via a patent ductus arteriosus (PDA) or multiple aortopulmonary collateral arteries. PA/VSD accounts for 2 percent of congenital heart disease. It is a relatively common cause of cyanosis (blueness) in newborn babies. Children with PA/VSD sometimes have a chromosomal disorder called DiGeorge syndrome, which can cause the child to have low calcium levels in the blood, to have more infections than normal, and to have learning disabilities.

PA/VSD is a congenital heart defect that can be discovered during pregnancy by fetal echocardiography. It can also be detected with the routine testing done on all newborns in the hospital nursery when they are checked for critical congenital heart disease.

Read more: An Overview of  PA/VSD

Merry Heart Camp

The Pediatric Cardiology Center of Oregon is proud to announce that we will be co-sponsoring a children’s heart camp in cooperation with Doernbecher Children’s Hospital called Merry Heart Children’s Camp. The camp is scheduled to open in the summer of 2016. The camp will host 48 children, 24 boys and 24 girls, ages 9 to 14 who have undergone open heart surgery. We will be asking campers to register starting in early 2016.

OVERVIEW

We are limited to 48 campers: 24 boys and 24 girls. Campers with heart conditions should be between the ages of 9 and 14 (prior to August 21, 2016). Campers will be accepted to camp as applications are received and reviewed.  Each camper must meet the following criteria: 

 

  • Heart conditions must be the primary health concern of the child.
    • The child has a basic knowledge of their heart condition.
  • The child must independently manage their daily routine.
    • Be self-sufficient in caring for hygiene, toiling and eating needs.
  • The child is seen by a pediatric cardiologist on a regular basis.
    • If the child is seen every two or three years, a summer camp physical will be accepted by the child's primary care physician.
  • The child has the ability to participate and engage in team-based activities.
  • The child demonstrates nonviolent behavior, follow the rules, i.e. staying with buddy/group leaders at all times.
  • Be able to stay overnight for four nights.

 

If the child has any other illnesses, disabilities (physical or developmental), or other health problems, Merry Heart Children's Camp will review those files on an individual basis and determine if the child will be accepted to camp.

COST

The cost for camp is $550.00, but the only charge to the camper is a nonrefundable registration fee of $50.00.

We would like to encourage any families who are in the position to pay the full camper fee or in between the $50.00 registration fee to the full amount, please do so.  Every dollar donated will help. Your support/donation will help Merry Heart Children's Camp and the campers who may not be able to pay more.  Thank you.

 

2016 Camper Application

Submit your camper's application and payment to:

Merry Heart Children's Camp

P.O. Box 80413

Portland, OR 97280

Click to Download Application →

PARENT INFORMATION PACKET

Click to Download Parent Information Packet →

2015 CAMP ACTIVITIES SCHEDULE

Click to Download Camp Activities Schedule →

Medtronic Melody Transcatheter Pulmonary Valve

medtronic melody heart valveby James P. Kyser, M.D.

The Medtronic Melody transcatheter pulmonary valve is the first and only FDA approved catheter-placed heart valve in pediatrics. We have been using this valve in our hospital since shortly after its FDA release to the United States. This new transcatheter heart valve has made tremendous improvements in our medical care for our patients, as now we can place a heart valve in the cath lab through the a vessel in the groin and spare them open-heart surgery.

Many patients have significant congenital heart disease that will require multiple surgeries in their lifetime. Many of these repeat surgeries will require multiple replacements of the pulmonary valve over their lifetime. This requires open-heart surgery, going on bypass, the possible exposure to additional blood products, an ICU stay, and 4-7 day hospital stay.

Now with this new Medtronic Melody transcatheter pulmonary valve, we are able to place many of these valves in the cath lab and dramatically cut down on the number of redo open heart surgeries. Rather than going to the operating room, the patient can go to the catheterization laboratory.

Read more: Medtronic Melody Transcatheter Pulmonary Valve

Overview of Heart Murmurs

heart murmur childHeart murmurs are very common in children. It is an extra sound that your doctor hears while examining your child. Murmurs are produced by the movement of blood through the valves and chambers in your heart. Some murmurs are faint while others can by loud. Murmurs may sound like a swish or an extra“lub-dub.” A heartbeat itself is simply the sound of heart valves closing while blood moves through it.

Heart murmurs fall into two camps: innocent or functional versus abnormal or pathologic. Innocent murmurs are common and occur in everyone at some point in their lives. It does not mean that there is a problem. Many healthy people have innocent murmurs.

Abnormal or pathologic heart murmurs can be a red flag that a problem within the heart exists. These murmurs can be caused by problems with the heart valves or holes in the heart that allows for blood to pass in between heart chambers. Heart defects can be present at birth or happened as a result of an infection or illness.

Read more: Overview of Heart Murmurs

Turner Syndrome and the Heart

turner syndromeTurner syndrome is a genetic condition that can cause serious heart problems. It affects only girls and women because it is caused by a missing or incomplete X chromosome (normally girls have two X chromosomes; boys have one X and one Y). The condition is rare, only affecting about 1 in 2,500 female births worldwide. There are about 800 new cases diagnosed in the U.S. each year.

Turner syndrome can be diagnosed in utero or in infancy, but if signs and symptoms are subtle, it may not be detected until later in life.

Signs and symptoms of Turner Syndrome

  • Swollen hands and feet
  • A wide and webbed neck
  • Low-set ears
  • Drooping eyelids
  • A low hairline on the back of the neck
  • Short fingers and toes
  • Sensitivity to noise
  • Thyroid problems
  • Learning disabilities
  • Delayed puberty
  • Infertility
  • Short stature

Read more: Turner Syndrome and the Heart

Kawasaki Disease: What You Should Know

Kawasaki Diseaseby Peter Chang, D.O.

Kawasaki Disease

Kawasaki disease is the leading cause of acquired heart disease in children. Kawasaki disease was first recognized in Japan, but now it has been diagnosed throughout the world. In the United States, it is estimated that more than 4,200 children are diagnosed each year. It is a condition that can cause inflammation of the small and medium sized arteries within the body. During the acute phase of the illness, children will present with a constellation of symptoms which makes up the clinical diagnosis of Kawasaki disease.

  • Fevers higher than 101.3 F (38.5 C), lasting one to two weeks.
  • Red bloodshot eyes, without drainage.
  • Enlarged lymph nodes in the neck.
  • Red cracked lips and a “strawberry” tongue.
  • Swollen and red palms and soles.
  • Rash involving the trunk and groin.

Despite decades of research the cause of Kawasaki disease has remained elusive. It is theorized that an infectious agent, like a virus may cause an inflammatory process to occur leading to Kawasaki disease. However, we do know that children younger the 5 years of age are most susceptible and boys tend to be affected more than girls. Also, children of Asian and Pacific Islander descent have higher rates of Kawasaki disease.

Read more: Kawasaki Disease: What You Should Know

Directed Donor Blood Donation for Your Child’s or Relative’s Upcoming Surgery

Directed Donor Blood Donation

What is Directed Donor Blood Donation?

If an individual requires blood for heart surgery, that blood can be provided from a blood bank using community donors, such as the Southwest Washington Blood Program (a division of the Puget Sound Blood Center used in the Legacy Health System) or from the American Red Cross. Alternatively, an individual can receive blood from a directed donor, which means blood from a parent or relative, or from banking blood from themselves in advance, which is called autologous blood donation. Autologous blood donation will not be discussed in this blog.

Currently approximately 1% of all blood collected is for directed donations. Most directed donations of blood are for red blood cells. Interest in directed blood donation arises out of concern regarding the risk of transmission of a virus at the time of a blood transfusion. It turns out, however, that directed donor blood is no safer than use of blood bank blood and this was demonstrated by a study in 1992, performed by the National Heart Lung and Blood Institute of the National Institutes of Health. This study compared 31,000 directed donors to 384,000 first-time community blood donors. The conclusion was that blood from directed donors was neither safer nor measurably less safe than blood bank blood.

There are special administrative issues involved with directed donor blood and often this needs to be organized well in advance of surgery to identify a potential donor and to make sure that the donor meets all the criteria that are required for routine blood donation. There are higher administrative costs which are not paid by insurance and are the responsibility of the family. Directed donor blood is always irradiated to kill any remaining white blood cells to prevent a rare but usually fatal complication called transfusion related graft versus host disease.

When making your final decision regarding whether you want directed donor blood for your child or relative, please keep in mind the above mentioned considerations as well as the fact that most blood banks generally do not recommend directed donation, also some blood programs do not offer this service. If you are interested in proceeding with directed blood donation, please inform our office staff at least two weeks prior to surgery.

Marc D. Le Gras, B.Sc., M.D., C.M.

Pediatric Cardiology

Pediatric Electrophysiology and Pacing