Posts filed under ‘CHD Research’

A Quiet Enemy to Recovery–Depression

Daryl Tomlin made a startling statement in an article published December 23, 2008 called “Depression After Open Heart Surgery.” He explained that “The greatest injustice done anyone facing open heart surgery is the lack of information and preparation for the depression that may follow.”  Well, sure, a 38-year-old adult may go through depression after such a major operation but what about our children?  Do they suffer depression after open heart surgery?

I discovered that the risk of depression after surgery for children is real and often present and overlooked.  A study performed in Korea at three major cardiac centers found that in 231 adolescents between the ages of 13-18, depression was a problem for 62% of patients (2008).  Some studies suggest that females have a higher incidence of depression following open heart surgery.

In 1998 the Alberta Children’s Hospital and the University of Calgary conducted a similar study.  This study contained similar results with more information regarding depression after open heart surgery.  Their study found that children with cyanotic heart defects (a defect resulting in deoxygenated blood passing through the body–often giving a blue appearance) were more likely to suffer from depression.  Their study stated that “children with cyanotic forms of congenital heart disease demonstrated more fears of the unknown, physiological anxiety, depression, and delinquent behaviors than the acyanotic children with congenital heart disease.”

While every child is different and every operation and recovery unique, parents of children and adolescents undergoing open heart surgery should be aware of this possibility.  Knowing the reasons and signs to watch for may help in the recovery process.

Some health professionals feel that their may be physical reasons behind this depression.  Tomlin states that some people believe the heart-lung bypass machine, no matter how safely screened the blood is, produces tiny air bubbles called emboli that are introduced into the body.  These tiny air bubbles can travel to the brain and block blood flow to the brain.  If too much air is present, mini-strokes or major strokes can occur.  Many feel that patients on the heart-lung bypass machine experience this mini strokes that alter areas of the brain slightly, causing depression.  Additionally, having decreased blood flow and higher oxygen levels in the brain can cause depression.  This may account for why children with cyanotic heart defects suffer more depression than those with acyanotic defects.

Others feel that the sheer volume of drugs and medications used during and after open-heart surgery may be to blame for the depression.  Tomlin states that blood thinners, pain medications, IV fluids, blood and blood products, and other drugs all received within a few days may “lead to a change in brain chemistry that could exhibit itself as depression.”

Depression is often hard to pinpoint.  For a child who has undergone open-heart surgery, complaints of pain, fears, sleeping problems, and other unusual symptoms may be present for two to three weeks after surgery.  These symptoms are normal and nothing to be alarmed at.  The body must adjust and heal before the patient feels “normal” again, however; if symptoms persist after four weeks, depression may be to blame.

Signs to watch for include:

*Apathy–apathy is a lack of interest or lack of enthusiasm for anyone or anything in the child’s life.  Apathy presents itself in a complete boredom or disinterest in all things that used to interest or excite the patient.

*Anger–anger now and then is normal for anyone.  Severe anger should be watched closely though, especially in a usually agreeable and calm child.  If unusual anger persists four weeks after surgery, you should talk to your child’s pediatrician.

*Feelings of doom–children may show strange fears of natural disasters or show feelings of sure destruction and doom.

*Desire for prescription medication–older children may develop a need for prescription pain medication.  They may look forward to taking it and  take it as often as possible.

*Seclusion–children may want to be left alone or stay in their rooms for hours alone.  They may not want to attend events where other people are present and may exhibit a desire to stay home and secluded.

*Persistent sadness–sadness that doesn’t seem to go away or a lack of happiness in usually happy activities can signal depression, especially in children.

*Persistent sleep problems–children who sleep too much, exhibit a fear of sleeping, or can’t fall asleep may have depression.

These signs are good to know and watch for following open-heart surgery.  Any of these signs that linger more than a month after surgery should be discussed with a pediatrician or other caregiver.

While some people feel that depression is inevitable in those who will develop it, other studies have shown disagreeing results.  The study conducted in Korea found that children with previously demonstrated resiliency to new situations, attentive and caring parent or parents, and proven high academic or personal achievements seemed to have less depression and psycho-social problem following surgery.  The study stated “that adolescents with higher resilience and an affectionate parent were less depressed.”

Additionally, some psychologists and therapists believe that having and learning coping abilities before surgery and, practicing them after surgery, may help children overcome depression.  Music therapy, meditation, relaxation, and deep breathing may help to relieve patients of depression and anxiety following open-heart surgery.

In his article, Tomlin stressed that if Cardiac Rehab is available, this can also help overcome the effects of depression.  Tomlin wants others to know that “if you or someone you know are facing open heart surgery, remember that depression is likely and a very dangerous enemy during recovery from open heart surgery.”

Ask for help if your child needs help.  Make sure their recovery from open-heart surgery leaves them with a Perfect Broken Heart both physically and emotionally.


May 25, 2010 at 4:57 am 2 comments

The End of A Beginning

CHD Awareness week came and went.  This year, I really wanted to help.  At the end of it all, I feel a world away from the awareness I hoped to raise.  I blogged all week, posted facebook statuses about CHD, was successful in getting Governor Herbert of Utah to issue a proclamation as well as Mayor Godfrey of Ogden, Utah.  Mayor Godfrey was kind enough to present his proclamation to our daughter.  I read about congenital heart defects and talked about it….with lots of people who already know about it.

What I was NOT able to do that I really wanted…

*Get media attention.  I contacted numerous members of the media, hoping they would cover the proclamation issue or write a story about CHD or cover it on the news.  My queries fell on DEAF ears.  I saw lots of cute stories in our local paper about a darling newlywed wife who covered her husband’s car in construction paper hearts, fun crafts to make for Valentine’s Day, a local Chocalatier who was named as one of the state’s best…lots of cute stories about Valentine’s Day, but not a word written or spoken about CHD!  Even our mayor’s office attempted to contact the media, they ignored his query just as they did mine.

*Sponsor an event.  I came across the 1 in 100 group too close to start anything.  I thought about a balloon launch, I read about a family who has teamed up with a local restaurant to offer 20% off dinner and raise proceeds on February 14, I heard about a friend who sets up a table at our Children’s Hospital…but I did not sponsor an activity.

*Get as involved as I wanted to.  I’ve read lots of posts and discussion boards this last week with lots of people complaining about how hard it is to gain media attention, get famous spokespeople or endorsements from celebrities, get legislation even introduced let alone passed.  I’ve heard that some feel there are way too many small localized groups and what we truly need is one large organization.  The American Heart Association is certainly large and national, however; they focus more on adult heart disease.  Celebrities, epsecially women, attend the annual heart truth red dress fashion show, in support of heart DISEASE which is much different than heart DEFECTS.  Likewise, the March of Dimes devotes a small portion of their time and interest to CHD, but focus more on premature birth and a generalized fight against all birth defects.

So, what is needed?  Where do I go from here?  If you had a successful CHD week please let me know what you did and HOW you did it.  If you have a successful non-profit organization that supports congenital heart defects, congenital heart defect research, support to patients and families affected by CHD, sponsoring heart surgeries for needy individuals and families…anything that is successful, please let me know.  I hope to rally the troops, continue my fight against this killer, and devote more of my time to overcoming and defeating Congenital Heart Defects.

February 16, 2010 at 4:40 pm 3 comments

Pulse Oximetry Testing Can Save Lives

In preparing to write this entry, I began my research as I normally do, by googling.  I have blogged about pulse-ox testing before, and again feel discouraged after my research.  The facts are this:

8-10 in every 1000 babies born will have a congenital heart defect (the numbers concerning this fact are all slightly different.  In fact, my state governor’s office was told by the State Health Department that the “numbers were slightly inflated”.  I have used the more conservative number so as not to upset anyone.  Either way, nearly 1% of all live births are affected by a heart defect). (cited from WebMd Heart Disease Guide)

Approximately 36,000 babies are born each year with a CHD.  (American Heart Association Website)

Less than 10% of CHD’s are diagnosed before birth.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (Children’s Heart Foundation)

The facts go on, the statistics continue.  Pulse Oximetry testing has been around for some time now, and saves lives of children with heart defects.  The test is non-invasive and simple.  A little monitor with a red laser on each side is pressed over the toe or finger of the baby, the oxygen levels are then tested in the blood stream.  Research has been done and continues to be done on this method of detecting birth defects.  Many, many researchers, scientists, and hospitals advocate for the routine and mandated screening of CHD’s of all newborns.  So, why is it not done??????  Most hospitals actually have this equipment already.  Why has the health department not made this part of the screening of newborns.

Here is where the semantics come in.  Yes, semantics.  Word games, really.  I could give you all the reasons opposing the testing.  The tests so far have not been conducted on a wide enough sampling of patients.  The tests produce false positives, resulting in unnecessary, expensive tests.  The research findings are provocative but inconclusive.  Every year these semantics continue, babies die unnecessarily.  Babies who could be given a chance at life by being treated for their undiagnosed CHD.

Many tests are already mandated, including PKU, and others and yet, CHD’s affect more children and more babies die from CHD’s than any other birth defect than the conditions already being screened.  Don’t get me wrong, I am certainly not downplaying the serious nature of other birth defects.  Every birth defect is a tragedy.  So why not test for the ones that can be tested for?  Some in the medical field are concerned about the added stress to parents of newborns if the  test registers a false positive and the added costs of expensive Echocardiograms.

So for now, pulse ox testing is not mandatory.  Newborns are not routinely screened.  But, you can ask for it.  You can make sure that within 24 hours of life, your baby is screened for an undiagnosed heart defect.  Chances are about 1 in 100 that your baby won’t have CHD, but if you are the 1 in 100, early diagnoses and treatment helps produce a positive outlook for years to come.  Ask for a pulse ox screening before you leave the hospital.

Contact your legislators and ask them to introduce a law that will mandate pulse ox testing.  Visit this link to my last post on pulse ox testing for more facts and the harmful ways some in the medical community undermine the importance of this kind of legislation.  Visit this link to hear the tragic yet courageous story of Kristine and her beautiful baby Cora, who had an undiagnosed CHD.  Help her spread awareness and fight the killer which robbed her of her precious baby.

Help save babies like Cora and thousands of others by getting involved in the campaign to mandate pulse oximetry newborn screening.


February 9, 2010 at 11:51 pm 1 comment

CHD Awareness Week

The Honorable Governor Gary Richard Herbert, governor of Utah, issued this proclamation in honor of Congenital Heart Defect Awareness Week, February 7-14, 2010.  The declaration reads:

Whereas, Congenital Heart Defects are one of the most frequently occurring birth defects and the leading cause of birth defect related deaths worldwide;

Whereas, more than one million families across America face the challenge and hardships of raising children with Congenital Heart Defects;

Whereas, each year, 40,000 babies are born in the United States with Congenital Heart Defects;

Whereas, some Congenital Heart Defects go undiagnosed until months or years after birth;

Whereas, undiagnosed Congenital Heart conditions may cause sudden cardiac death in young athletes, yet despite these statistics, newborns and young athletes are not routinely screened for Congenital Heart Defects;

Whereas, a disproportionately small amount of funding is available for Congenital Heart Defect research and support;

Whereas, Congenital Heart Defect Awareness Week provides an opportunity for families whose lives have been affected by this defect to celebrate life, honor dedicated health professionals, and associate with others in order to understand how to better deal with this issue; and

Whereas, Congenital Heart Defect Awareness Week provides an opportunity to share experience and information with the public, as well as the media, in order to raise public awareness about Congenital Heart Defects;

Now, Therefore, I Gary R. Herbert, Governor of the State of Utah do hereby declare February 7-14, 2010 as Congenital Heart Defect Awareness Week

February 7, 2010 at 6:20 pm 1 comment

Melody Valve–A Medical God-send

This is Dr. James Locke.  He is a cardiologist at Boston Children’s Medical.  At this time I stand in awe of the extensive research work and clinical work this man has done in behalf of heart children.  He, and many others like him, are advancing treatment of congenital heart defects.  According to his research website, he “has developed and provided the initial descriptions of nearly a dozen new techniques in interventional cardiology.”  He was one of the iventors of the cardioseal, a device inserted through a catheter to correct ventricular septal defects, Fontan fenestration, and patent foramen ovale.  Did you miss it?  Did you miss that the cardioseal is inserted through a catheter?  For those of you who have undergone open-heart surgery you know what great news this is.  No more bypass machines, stopping the heart, cutting the chest open, swelling of the heart, drainage, pressure, compression.  Certainly a cath procedure is not without possibility of complications, however; in comparison to open heart surgery, those risks are fewer and less serious.

I recently contacted Dr. Locke when I heard about an investigational new procedure for pulmonary valve replacement.  My daughter had severe pulmonary stenosis with her  Tetralogy of Fallot.  During surgery, the only way to correct extreme high pressures in one side of the heart was to cut into the pulmonary valve, resulting in severe regurgitation through that valve.  This leads to an enlarged right ventricle, exercise intolerance, abnormal arrhythmia, and sudden death in later years if left uncorrected.   Now, ten years later, we are facing the first of her pulmonary valve replacements.  This road down pulmonary valve replacement is a road that seems long.  As Abby outgrows the valve–open heart surgery.  As the valve wears out–open heart surgery.  In essence, Abby is among the unlucky with Tetralogy of Fallot who need subsequent surgeries due to the pulmonary valve regurgitation.

In preparing for this surgery, I came across an article describing the new procedure Dr. Locke was investigating called the Melody valve.  This procedure, being tested in Europe and Canada for some time, was being tested in 30 patients here in America.

This is the catheter containing the Melody valve.  The catheter is inserted through the groin, through the blood stream and put in place with the use of cameras and the balloon (as can be seen in the picture).  This is similar to angiograms or other cath procedures.  After effective results in the 30 initial patients, the trial was enlarged to 99.  Last month, the FDA announced its approval of the Melody valve for an enlarged research group of 4,000 children.  The valve and procedure had received the European CE Mark approval and the Canadian approval before trials began here in America.

Medtronic, the company who makes the valve, announced that the valve is

“Delivered through a catheter requiring only a small incision, the Melody valve will benefit children and adults who are born with a malformation of their pulmonary valve, which is the valve between the heart and lungs. These patients often require open-heart surgery to restore effective blood flow to their lungs. Previously, the only way to repair or replace a failed pulmonary valve conduit was through additional surgeries. To date, more than 1,100 patients worldwide have received a Melody valve.

“The Melody Transcatheter Pulmonary Valve is a significant technological breakthrough and offers a reprieve for many patients with congenital heart disease – many of whom are young and will require several heart surgeries over their lifetime,” said pediatric cardiologist Dr. William E. Hellenbrand of the NewYork-Presbyterian Morgan Stanley Children’s Hospital and Columbia University Medical Center.

“The Melody valve gives patients with congenital heart disease a new, non-surgical approach to managing their disease.”

“This novel technology will improve the lives of thousands of patients in the United States,” said Dr. John Liddicoat, vice president and general manager of the Structural Heart division, part of the CardioVascular business, at Medtronic. “Medtronic is leading the development of transcatheter therapies for heart valve disease. FDA approval of the Melody Transcatheter Pulmonary Valve is evidence of that leadership.” (brown text quoted from linked website)

The Melody valve requires a short 2-4 day hospital stay after implantation, without any ICU time and patients are not faced with the discomforts and pain associated with open-heart surgery.

Dr. Locke performed the first successful American trial at Boston Children’s Hospital in 2007 on a four-year-old boy with Tetralogy of Fallot who had severe complications from H1N1, resulting in the breakdown of his valve.

This valve is more than a novel medical advance.  For those of us who face the future of pulmonary valve replacement surgery, again and again, this little conduit is a god-send.  My daughter, having her pulmonary valve replaced this summer, is not a candidate for the Melody valve this time around.  Her pulmonary valve is virtually non-existent, as they had to cut into it deeply to overcome the effects of the stenosis.  After contacting Dr. Locke, and sending him her records, he informed us that in the future, she would be a candidate for the surgery once a valve was replaced that was functioning.  So, while we missed the Melody valve this round, future replacements can be done without open-heart surgery.

Thanks to the organizations who raise money for research and funding, Dr. Locke can continue to pioneer new methods and procedures to reduce open-heart surgeries.  Thanks to all those who pioneer for my daughter and the thousands of other children like her.  You work and dedication is appreciated.

February 6, 2010 at 4:31 pm 3 comments

Pulse Ox Testing Could Save Lives

If you have had a child, you know that your baby is given a variety of newborn screening tests for inherited and genetic disease.  The most common of these tests is the PKU test, which involves a heel poking and squeezing the blood into various circles on a piece of paper.  The test is then repeated at 2 weeks at the doctor’s office.  Consider the following information from the website

“According to the Center for Disease Control and Prevention website , “One of every 33 babies is born with a birth defect. A birth defect can affect almost any part of the body. The well being of the child depends mostly on which organ or body part is involved and how much it is affected. ”

“Within 48 hours of a child’s birth, a sample of blood is obtained from a “heel stick,” and the blood is analyzed for (up to) 35 treatable diseases (depends on the state), including phenylketonuria, sickle cell disease, and hypothyroidism”.

“Each year, at least 4 million babies in the United States are tested for these diseases, and severe disorders are detected in about 3,000 newborns.” This means one of every 1,300 babies tests positive for one of these diseases .

“Many birth defects affect the heart. About 1 in every 100 babies is born with a heart defect. Heart defects make up about one-third to one-fourth of all birth defects . Some of these heart defects can be serious, and a few are very severe. In some places of the world, heart defects cause half of all deaths from birth defects in children less than 1 year of age. ”

Imagine how many newborn children could be helped with a NON-INVASIVE oxygen saturation level test!

The information is sobering and yet still, CHD’s are not screened for in newborns.  On August 21, 2009 the New York Times ran an article which included the following story:

“In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.”

The article was written by By Darshak Sanghavi, M.D., a pediatric cardiologist.  Dr. Sanghavi goes on to explain that pulse ox screening for newborns could diagnose three-quarters of the babies whose congenital heart defects were missed or could not be diagnosed otherwise and would have been sent home.  Often times these infants are not diagnosed with CHD until after it is too late, post-mortem.  Dr. Sanghavi goes on to say that pulse oximetry testing is non-invasive and hospitals are already equipped with pulse ox machines.  The cost would be similar to the cost of the PKU screening or hypothyroidism screening.  He estimates that 1 out of every 2000 babies screened would be diagnosed with a CHD and treated, thus saving lives of babies who would otherwise be sent home without being diagnosed.

It seems that medical associations, doctors and nurses alike all agree that pulse ox screening could save lives and help in missing the diagnosis before serious problems occur.  However, they also agree that more trials need to be done in order to solidify the need for the tests.  According the American Heart Association, the tests run thus far have varied from being 0%-100% accurate.  It is agreed that during the first 24 hours false negatives are more common as babies pulse ox levels vary.  After the first 24 hours however, it seems that the screening is generally very accurate.  Because of these variances and discrepancies, the American Heart Association has concluded that “Currently, CCHD is not detected in some newborns until after their hospital discharge, which results in significant morbidity and occasional mortality. Furthermore, routine pulse oximetry performed on asymptomatic newborns after 24 hours of life, but before hospital discharge, may detect CCHD. Routine pulse oximetry performed after 24 hours in hospitals that have on-site pediatric cardiovascular services incurs very low cost and risk of harm. Future studies in larger populations and across a broad range of newborn delivery systems are needed to determine whether this practice should become standard of care in the routine assessment of the neonate.”  In other words more testing is needed.  Unfortunately, many professionals have taken this to mean that the American Heart Association doesn’t feel the testing is necessary or useful.  Charles Bankhead of the website MedPage today, which is supposed to be a useful tool for medical professionals, has written an article entitled “Routine Pulse Oximetry for Newborns Not Supported”.  This article gives the erroneous assumption that because of the high rate of different outcomes of the studies already performed, the American Heart Association doesn’t support the testing, when in fact the AHA stated clearly on their website that it does support testing and would like more trials to be run so the screening of infants can be put into place.  The article on actually goes so far as to list an action point in the article in which physicians are encouraged toExplain to patients that the American Heart Association and American Academy of Pediatrics have concluded that a test to detect congenital heart disease in newborns should not be performed routinely.”

These statements are harmful to the future of pulse ox screening in infants.  What can we do?  Get involved!!  Contact your local congress representatives and senators and tell them you would like to see a bill that would mandate pulse ox testing in infants.  Contact the American Heart Association asking them what can be done and start a grass roots movement with a petition asking laws to be passed the mandate this life saving testing.  Very few states have any kind of legislation to support CHD screening.  Let’s save some lives and start by screening for the Number 1 birth defect, heart defects.

August 22, 2009 at 1:32 am Leave a comment

Heart Facts from It’s My Heart–A Non Profit Group

The following are some facts given by a great non-profit organization called It’s My Heart.  Their website has some great information and great ways to get involved, find support groups and local chapters in your area and just learn more about CHD!  They also have some fun shopping I didn’t know about when I made my other post on shopping that helps.  Check out their great store, and remember, buying items here helps out CHD research, awareness, and support.
  • Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
  • Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
  • The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
  • This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
  • Though research is ongoing, at least 35 defects have now been identified.
  • 4-8% born with CHD have Hypoplastic Left Heart Syndrome
  • 4-10% born with CHD have Atrioventricular Septal Defects
  • 8-11% born with CHD have Coarctation of the Aorta
  • 9-14% born with CHD have Tetralogy of Fallot
  • 10-11% born with CHD have Transposition of the Great Arteries
  • 14-16% born with CHD have Ventricular Septal Defects
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
We really need to find ways to get more research done!!!  Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

Yet funding for pediatric cancer research is 5 times higher than funding for Congenital Heart Defects.

August 19, 2009 at 8:29 pm Leave a comment

About Using My Writing on Your own Site

I love it when others want to share what I have written here. You are more than welcome to share any articles or posts with others, HOWEVER; if you do so, I ask that you give proper credit to this blog and include a hyperlink to ALL information posted on this site is copyrighted.
Business 2 Blogger

Bloganthropy Badge–I took the Pledge

Pledge Your Social Media Influence for Good at Bloganthropy

Nicole Wardell