Beads of Courage

So I get asked alot what is Beads of Courage?

The Program is a nationwide resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children like my daughter tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Ongoing evaluation of the Beads of Courage program indicates that the program helps to decrease illness-related distress, increase the use of positive coping strategies, helps children find meaning in illness, and restore sense of self in children coping with serious illness. The program also provides something tangible the child can use to tell about their experience during cancer treatment and after.

Olivia began her journey in December of 2002. 24 hours after she was born a nurse noticed that she was having trouble nursing. She asked if she could take her to the nursery to just check her vitals and that she would bring her right back to us. Olivia never came back...She was immediately taken to the NICU where they began running all kinds of tests on her to see what was wrong. This is when we got the news that she was born with 3 Congenital Heart Defects affecting both sides of her heart. She had open heart surgery in June of 2003 at Children's Healthcare of Atlanta when she was 6 months old to repair her Pulmonary Valve and her Coarctation of the Aorta. She is doing remarkably well today but will have to have more surgery in the future.

As you can imagine behind every success story like Olivia, there is a kid. A real kid who never asked to be born with CHD. So many kids like her have no choice but to go through what is necessary to feel better, to be able to play, and sometimes just to live. Watching them go through painful procedures and to try to hold back the tears of having just one more poke or needle prick is hard.  They fight a battle that most of us will never see or ever have to endure. This is what the Beads of Courage program is here for. So that in some way, big or small, these kids can be recognized for the sheer bravery that comes with just being themselves. They receive a handmade bead for many of the procedures they have to endure- pokes, echoes, surgeries, admission in to the hospital, and so many other things. When heart patients complete treatment, they have this beautiful strand of beads that they can point to and without saying a word, it shows how brave they are. Every bead required Strength, Patience and Courage. That's what the Beads of Courage are all about.

As a mom who has experienced this program first hand, I can tell you that it has allowed my daughter to share with so many others about her journey. It has reminded her that she has Courage, Patience and enormous amount of Strength.

You can be a part of this wonderful program too, click here to make a donation today! Please join us on March 26th for our 2nd Annual Bowling for Beads Event!

Pulse Oximetry Screening on newborns - soon to become standard?

 

A test that measures oxygen levels in newborns can detect "critical" congenital heart disease, but there are variables involved with the test that require more study before it is adopted for universal newborn screening, according to a new joint statement from the American Heart Association and the American Academy of Pediatrics.

A critical congenital heart defect is one a child is born with that requires surgery or catheter intervention in the first year of life, such as Tetralogy of Fallot and Coarctation of the Aorta, among others. The benefits of the oxygen test, called a pulse oximetry screening, outweigh the risks, but the best way to implement pulse oximetry screening is not well established by research.

Thus, the organizations affirm that the test can be used at a physician's discretion, and call for more research to determine whether the test should become part of the routine assessment of all newborns in the United States.

In the research reviewed, the test's ability to detect critical congenital heart disease varied widely, from zero to 100 percent. According to the statement, most studies that have analyzed pulse oximetry in newborn screening were relatively small, and screening protocols differed with respect to both age at screening and cutoff levels for an abnormal screen. A normal oxygen reading is between 97-100 percent. Because oxygen levels in healthy newborns can vary considerably in the first 24 hours of life, the authors note that testing after 24 hours would appear the best strategy. False positive rates were just .035 percent in infants screened after 24 hours. "The statement is important because there hasn't been any strong guidance so far regarding the use of pulse oximetry as a diagnostic technique in newborns," said William T. Mahle, M.D., FAAP, chair of the writing committee and associate professor of pediatrics at Emory University School of Medicine in Atlanta. "Some hospitals across the country have adopted it and others haven't, so we wanted to review the available evidence and offer a consensus opinion on the topic."

The test potentially can identify significant or life-threatening heart defects that may otherwise go unnoticed or at least unnoticed before a newborn is released from the hospital, Mahle said. Early identification of certain defects is important, and can allow doctors to begin appropriate treatment or transfer to a specialty hospital.

Pulse oximetry was developed in the early 1970s, based on the fact that red blood cells that carry oxygen absorb different wavelengths of light vs. those that don't carry oxygen. Oxygenated blood cells absorb infrared light, while deoxygenated cells absorb red light. The test measures how much oxygen is in blood that flows through the arteries. Arterial blood oxygen levels are measured by a device with a thin wire, tipped by a small red light. The wire is taped to an infant's foot for a few minutes to obtain a reading. In older children and adults, pulse oxygen is often measured by a device clipped on a finger.

The overall cost of the test is reasonable, and is about the same as the cost of other newborn screening tests.

Source: American Heart Association, 07-07-09

I am currently working with a State Rep. to get this passed in Georgia! Stay Tuned!

Pulse Oximetry- A Scientific Statement from the AHA and AHP

Background— The purpose of this statement is to address the state of evidence on the routine use of pulse oximetry in newborns to detect critical congenital heart disease (CCHD).

Methods and Results— A writing group appointed by the American Heart Association and the American Academy of Pediatrics reviewed the available literature addressing current detection methods for CCHD, burden of missed and/or delayed diagnosis of CCHD, rationale of oximetry screening, and clinical studies of oximetry in otherwise asymptomatic newborns. MEDLINE database searches from 1966 to 2008 were done for English-language papers using the following search terms: congenital heart disease, pulse oximetry, physical examination, murmur, echocardiography, fetal echocardiography, and newborn screening. The reference lists of identified papers were also searched. Published abstracts from major pediatric scientific meetings in 2006 to 2008 were also reviewed. The American Heart Association classification of recommendations and levels of evidence for practice guidelines were used. In an analysis of pooled studies of oximetry assessment performed after 24 hours of life, the estimated sensitivity for detecting CCHD was 69.6%, and the positive predictive value was 47.0%; however, sensitivity varied dramatically among studies from 0% to 100%. False-positive screens that required further evaluation occurred in only 0.035% of infants screened after 24 hours.

Conclusions— 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.

Currently, children with CCHD are diagnosed by a variety of mechanisms. Neonates with CCHD may be diagnosed in the newborn nursery on the basis of physical examination findings, such as heart murmurs, tachypnea, or overt cyanosis. These findings are not always evident before hospital discharge, which may occur before 48 hours of life. A recent study from the United Kingdom suggested that 25% of infants with CCHD were not diagnosed with heart disease until after discharge from the newborn nursery. The median age of diagnosis in these cases was 6 weeks. A recent publication from the United States suggested that delayed or missed diagnosis occurs in 7 per 100 000 livebirths. However, because these data are derived from a birth defect surveillance program with passive and thus incomplete case ascertainment, this calculation most likely represents a minimum estimate.

Newborns with CCHD are susceptible to profound, sudden worsening in clinical status in the first days and weeks of life. These acute physiological changes correspond to changes in pulmonary vascular resistance and closure of the ductus arteriosus. In neonates with CCHD, the ductus arteriosus is often essential for maintaining either pulmonary or systemic blood flow. These CCHD defects are considered ductus arteriosus–dependent lesions. The newborn hospitalization provides a critical window for caregivers to identify CCHD lesions in order to avoid hemodynamic embarrassment. The timing of constriction or closure of the ductus arteriosus also explains why children with CCHD may be particularly vulnerable to cardiovascular collapse soon after discharge from the newborn nursery.

Children with CCHD are identified in a variety of ways. Since the late 1980s, prenatal ultrasound has been used to screen for congenital anomalies. An anatomic ultrasound is typically performed at 18 to 20 weeks’ gestation. During this process many, but not all, cases of CCHD can be identified by a methodical scan. When CCHD is identified by this approach, the patient is often referred to a pediatric cardiologist for confirmatory imaging and counseling. With knowledge that the fetus has CCHD, the newborn can be delivered in a hospital capable of providing intensive care, including prostaglandin, as well as mechanical ventilation. The newborn can be stabilized and transferred to a congenital heart center.

Prenatal ultrasound, performed by those with specific training in congenital heart disease, can identify a variety of CCHD lesions; however, numerous studies have reported that even when fetal ultrasound is routinely performed during pregnancy, fewer than 50% of cases of CCHD are identified. Most of the published literature comes from European countries, which tend to have more centralized healthcare systems and uniform practices vis-à-vis prenatal ultrasound. As such, these systems may represent the best-case scenario for population prenatal ultrasound screening. In the United States, many congenital surgery referral centers have reported prenatal detection rates >50% for functional single-ventricle lesions, although the detection rate is generally <30%>24 hours after birth would appear to be the most reasonable strategy. This screening strategy assumes that the majority of newborns will not be discharged on the first day of life. With early discharge at less than 24 hours of age, many infants would not be screened.

The above are excerpts from the full report. To read the full report, click here.

Butterflies....

I have been a little distracted lately. Ella Rose would have been 6 this year, and I wonder what our lives would have been like with 3 little ones running around. I guess being a little distracted isn't a bad thing. I think about her often, everyday as a matter of fact. It's kind of a funny thing. Whenever I see butterflies I think of her. The day we laid her to rest there were butterflies everywhere and can't help but think of her with all the butterflies all around us. So hard to believe...six years. Wow, where has the time gone.

When I think of her and the tragedy of that, I have trouble putting things into perspectives. That's an odd statement I guess. It's just...lately I've learned more about other people, friends, who have had their own brands of tragedy in thier lives and I am left feeling just a little depressed. Why does so much tragedy and bad have to happen to so many people? Recently we lost a great friend to pancreatic cancer at the age of 35. I heard about a young man in our community who is 26 years old and has a wife and two small children who was diagnosed with stage 4 cancer and is fighting for his life at this very moment. A child at the preschool where I work, her mom was just diagnosed a couple of weeks ago with stage 4 breast cancer. I hear of so many people who are dealing with tragedy and I feel so badly that so many people have to suffer like this. I guess I felt better when I thought I was one of a few that had such hardships. It's a little disheartening to find there are far more suffering than I ever imagined. And then the devastation in Japan and the tsunami. so hard to see but I will continue to pray for the devastation in Japan and all the families who have lost so much there.

Anyway, as my motto says, trying to take it day by day, step by step. I am trying to find the good and positive and wonderful in each new day. Trying to remember to count my blessings and be thankful for what I do have and for what my friends who have been or are still suffering have. There is so much goodness in the world, so many things that are right, we must not lose focus of them and let the dark take hold. Rejoice in the small moments, connections with old friends, bright clear spring days, the beauty of the flowers as they start to bloom and show their vibrant colors on the trees, the smile of a loved one, a hug, a random act of kindness from a stranger, our own health, the fact we have roofs over our heads and food on the table and jobs. You just never know what those around you are going through.There is much to be thankful for....just trying, trying to keep that as my focus. And I will always, always love watching the beautiful butterflies!

I recently came accross this quote that sums it up:

"Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good."

- Elizabeth Edwards

So very, very true.

Bowling for Beads Event 2010

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