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Mon, Nov 25 11:38am · Children's of Alabama Joins HLHS Consortium in HLHS

man-and-woman-holding-plastic-heart-16-x-9

 

BIRMINGHAM, ALABAMA — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Children’s of Alabama are proud to announce their collaboration within the HLHS Consortium to provide solutions for patients with HLHS. The consortium aligns regional medical centers of excellence and advocacy groups with the shared goal of bringing groundbreaking new research and treatments to individuals affected by congenital heart disease, including HLHS. Children’s of Alabama is now the 10th member of the consortium.

 

“The HLHS Consortium is a movement of inspired leaders who believe we can do things differently,” says Tim Nelson, M.D., Ph.D., director of Mayo Clinic’s Program for HLHS. “We are expecting to do things faster than ever before, and we know that bringing in the hardworking efforts and outstanding outcomes of Children’s of Alabama will help enhance our research.”

 

HLHS alabama leadersFrom left: Dr. Waldemar F. Carlo, Dr. Tim Nelson, Children’s of Alabama CEO & President Mike Warren, and Dr. Robert Dabal.

 

“The heart specialists at Children’s of Alabama combine knowledge and experience to care for infants and children with hypoplastic left heart syndrome, and we are excited that this new collaboration with Mayo Clinic gives us the opportunity to continue paving the way for more research about congenital heart defects,” says Dr. Waldemar F. Carlo, a pediatric cardiologist at Children’s of Alabama. “Joining this esteemed group of health care providers brings us closer to even more resources for our patients and their families.”

 

You can read more about this exciting collaboration on the Mayo Clinic News Network.

 

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

 

Tue, Nov 19 1:27pm · Cincinnati Children's Hospital Joins HLHS Consortium in HLHS

cincinnati-childrens-exterior

 

CINCINNATI, OHIO — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Cincinnati Children’s Hospital Medical Center are pleased to announce their collaboration within the HLHS Consortium to provide solutions for patients with HLHS. The consortium aligns regional medical centers of excellence and advocacy groups with the shared goal of finding solutions for individuals affected by congenital heart disease, including HLHS.

 

“We’re excited to collaborate with Dr. Tweddell and the team at Cincinnati Children’s Heart Institute,” says Tim Nelson, M.D., Ph.D., director of the Program for HLHS. “They are not only a center of excellence for the early-stage HLHS surgeries, but they also provide high quality, comprehensive care for teens and adults with congenital heart disease. We’re proud to work together with them to find new ways to strengthen the hearts of individuals with HLHS.”

 

You can read more about this collaboration on the Mayo Clinic News Network.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

Wed, Nov 13 2:19pm · New Long-Term Guidelines for Patients after Fontan in HLHS

shutterstock_732471775

“Evaluation and Management of the Child and Adult with Fontan Circulation: A Scientific Statement from the American Heart Association.” Circulation.2019; 140:e234-e284

The American Heart Association (AHA) recently proposed new guidelines for how patients with Fontan circulation should be monitored for potential complications. The article also proposed a “Fontan Circulation Surveillance Testing Toolkit” to guide physicians on which tests should be performed and when.

Lynn Cern, RN, is a nurse research coordinator with the Mayo Clinic HLHS Program. She reviewed the new guidelines and has summarized them below. She also developed a convenient, printable checklist with these questions for your cardiologist that you can find on our website!

 


Guest Writer – Lynn Cern, R.N.

The medical community does a good job preparing you for the sta20982194[1]ged surgeries that are needed with a functional single ventricle. Those stages are completed when you leave the hospital after the Fontan operation. Then what? Of course, there are the post-operative clinic visits, but what happens when your cardiologist tells you that you don’t need to be seen for another six months, or even a year?! Regular and frequent visits to the cardiologist have been a way of life for at least the first three years of life. But once you’ve gotten through the “planned” or “anticipated” tough stuff, you may start asking “Now what do I do??”

 

Primary Care

First, make sure you have a Primary Care Physician (PCP). A PCP is a physician (pediatrician, family practice, or general internist), an advanced practice registered nurse (APRN), or a physician’s assistant (PA). You want your PCP to be someone you can trust, communicate well with, and hopefully even like.

Topics that need to be established with your PCP include:

  • The cardiologist: Your PCP must know who your cardiologist is, and accept that it is the PCP’s responsibility to keep communication open in both directions with your cardiologist. Be sure that records of any problems and routine care are sent to your cardiologist’s office. Your cardiologist needs to be informed of any necessary or elective procedures or surgeries. Any new medication also needs to be reported to your cardiologist.
  • Methods of communication: Establish the best way to communicate with your PCP. Should we email or call, or use an online patient portal? Should it be through ancillary staff (nurse or secretary)? How should I communicate if I have an emergency? When do I need to go directly to an Emergency Department? (Have a plan ahead of time and know where the closest Emergency Room is.)
  • In their absence: Who will cover or help in your PCP’s absence?

 

General Health Topics

Vaccinations, including annual flu shots, must be kept up to date!

Dental care is essential for the rest of your life. Regular cleanings are part of good dental care. Be sure to establish with your cardiologist whether you need to take antibiotics before dental visits. Have your cardiologist or PCP provide a standing prescription to your pharmacy that can be filled when you need it. Similarly, if you need antibiotics before the dentist, you will probably need them before other planned procedures. Always check with your cardiologist if you plan a surgery or invasive procedure, including tattoos and piercings.

Many drugs can compromise heart function or cause heart rhythm problems. This includes non-prescription (over-the-counter) medications and recreational substances. Patients after Fontan should have their cardiologist assess any new medications or substances.

Plan ahead: Whether traveling or relocating, have a plan to inform a new caregiver about yourself. Keep copies of current EKGs and echocardiograms. Make a list of all your surgeries and all medications you are taking, and keep it updated.

Your Cardiologist: If your cardiologist is a pediatric cardiologist, you may need to transition to an adult congenital cardiologist at some point. Some congenital cardiologists are board certified or trained to care for both children and adults, and can care for you into adulthood.

Staying Fit! It is crucial that post-Fontan patients stay physically fit! Find the method of exercise that works best for you, one that you enjoy. Follow healthy eating guidelines. Overweight or obese patients after Fontan have an increased risk of developing some of the problems known in patients after Fontan.

 

Long-Term Assessment of the Adult Patient after Fontan

The following topics are areas/body systems that need to regularly be assessed in a patient after Fontan. Your cardiologist should monitor and you should report any symptoms associated with these areas:

  • Atrioventricular valve regurgitation – the valve between your atrium (upper chamber) and ventricle (lower chamber) can have problems due to leaking.
  • Arrhythmias – You may or may not feel palpitations (your heart beating fast or irregularly). This can lead to shortness of breath, lightheadedness, or passing out.
  • Brain and Neurocognitive Development – Several factors contribute to brain and neurocognitive development, which put the patient after Fontan at increased risk for deficits. Early testing and intervention help identify tools needed to optimize the Fontan patient’s potential.
  • Cyanosis – Your cardiologist will monitor your oxygen saturation. After Fontan operations, the typical person has an oxygen saturation of 90-94%. If it is lower, you are “blue” or more cyanotic. This can lead to complications and the cardiologist may discuss further testing, such as cardiac catheterization.
  • Exercise and FitnessExercise is essential for patients after Fontan!!!! Overweight Fontan patients do not do well long term. Regular exercise and fitness will help the Fontan patient grow, develop, and maintain good bone health, Be sure to discuss specifics with your cardiologist.
  • Ventricular dysfunction – Ventricular function is generally assessed on echocardiogram, or other imaging testing. If your ventricular function decreases, your medications may need to increase or change.
  • Protein-losing enteropathy (PLE) & Plastic bronchitis – PLE is the abnormal loss of protein from the body, usually in your stool. Plastic bronchitis causes a thick material to build up in the breathing tubes of the lungs causing a chronic productive cough and increased cyanosis.
  • Renal dysfunction – Fontan circulation, toxic medications, and many surgeries can lead to decreased kidney function.
  • Contraception and Pregnancy – Early identification of whether a female Fontan patient should become pregnant is essential. Preventing a pregnancy by prescribing low-risk contraception is also crucial, as well as genetic counseling. ALL women with a Fontan need to discuss these issues with their cardiologist BEFORE thinking about becoming pregnant.

 

Other adult illnesses: Just like other adults, the adult patient after Fontan will encounter other health problems: gall bladder issues, appendicitis, orthopedic issues, and gastrointestinal issues to name a few. How should they be handled? Make sure your cardiologist is always involved, and that any provider who cares for you has your complete and current medical history.

Converting YOUR Fontan: Was your Fontan completed before 1990? You may be a candidate for a revision of that surgery.

Transplantation: Though it is something no one likes to think about, cardiac transplantation can be an option for the failing Fontan, especially for those suffering from PLE. Your cardiologist should monitor your heart function to incorporate all other possible treatments to delay or prevent the need for transplant. However, if transplant is needed, your cardiologist should have an open and honest discussion with you about which hospitals specialize in transplant and have the highest volumes and best outcomes.

 

 

Thu, Oct 31 2:07pm · Interview with Kate Praska, RDMS – Obstetrics Sonographer (Part 2/2) in HLHS

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October is Ultrasound Awareness Month. Because 60-70% of HLHS cases are diagnosed in utero by ultrasound, the ultrasound sonographer often plays a crucial role in a family’s HLHS journey.  Earlier this month, we shared Part 1 of our interview with Kate Praska, RDMS, an obstetrics (OB) sonographer at Mayo Clinic. Below, she tells us about the training, challenges, and what keeps her interested in this exciting field.

 


 

What got you interested in this job and what keeps you interested?

My first job was mainly in OB and then I worked in a high-risk clinic, which is where I became passionate about the heart. And the job is still really challenging, but yet it’s rewarding and fun! The majority of babies are perfect and it’s a blast. Even when there’s something minor that means they need to come back for another scan, it’s like, who doesn’t want to come back and see their baby again? I have an ultrasound picture of my 28-yr old son, and he still looks like he did in the image!

What’s also changed is that people used to come in and not say very much. But now the job has really changed into more entertainment. People want 3Ds, 3Ds of the face, 3Ds of the legs, they want to know why their friend got a better picture. And I do want to make that exam fabulous for them! When I have a fun patient come in, we have a blast! But if I have someone making a lot of demands, or if I need mom to be on her side so I can look at the baby and she’s complaining about not being able to see the screen, my first and foremost goal is that I want to make sure that anatomy is ok. That’s what I’m there for. But I wouldn’t be in this field if I didn’t love it!

 

What kind of training does a sonographer need?

I graduated in 1989 and have been scanning ever since. Back at that time, one would have gone through x-ray training for 2 years and become registered. Then if you wanted to specialize in ultrasound, you would go back through a one year program that was strictly ultrasound and then become registered. At that time, it was a nationally certified program, so you took your national boards. We didn’t have computers much then, and I had to drive to Chicago to take mine! And now it has progressed to a bachelor’s program.

 

What’s the most challenging part of your job?

The hardest part is the position of the baby. Ultrasound works using sound waves, and it’s helpful if you can go through fluid or get close to what you’re taking a picture of. But if the spine is facing up and the heart is down, then it can be very difficult to look at the heart. So we’ll flip patients around to try to get the chest of the baby up so we can get a better look at it. It seems silly when we ask people to come with something in their bladder, but it acts like a window for us and takes the bend out of the uterus to help us see better.

If a patient weighs 300 pounds and I’m trying to look at something that’s as big as my thumbnail, that can be hard. We can sometimes push into the abdomen to get closer and see better, but that’s understandably uncomfortable. But if there’s six inches between the baby and my transducer it can be hard to see the baby’s heart. Sometimes we can scan through the belly button or on the side of the abdomen instead. Also, some people’s skin just scans differently. For example, diabetic patients’ skin seems a little tougher, and some ethnicities have skin that scans differently. Sometimes we bring patients back to reevaluate, not because we’re concerned, but because we may need more time for the baby to grow so we can see better.

 

What’s the most important thing that you tell the students you work with?

Even as I get older, I don’t just want to do easy cases. I still like to be involved in challenging and complex work because it keeps me on my toes and forever learning. I tell students all the time, if I see them going fast, I say, “Ok, you’re fast now. But your pictures are sloppy. What are you going to do if you miss something?”

I know we sound difficult sometimes when we want people have to have a full bladder, lay in an uncomfortable position, or are annoyed if they want to be entertained the whole time. But in the end, I’m there to make sure the baby is healthy. Once we can check all the little boxes in our head, then we can entertain away!

comparison

 

How many people want to know the sex?

It’s totally changed again. It went from not wanting to know, to wanting to know, then we had the gender reveal trend. I had one patient ask me to call the local bakery and I got put on hold for five minutes. It was such a busy day and I got so far behind, so now we just put it in an envelope. But I’d say today it’s about 50% want to wait for it to be a surprise. They say over in labor and delivery now, it’s so much fun!

 

Thanks for your time, Kate!

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Tue, Oct 29 2:18pm · Interview with Kate Praska, RDMS – Obstetrics Sonographer (Part I) in HLHS

 

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October is Ultrasound Awareness Month. Because 60-70% of HLHS cases are diagnosed in utero by ultrasound, the ultrasound sonographer often plays a crucial role in a family’s HLHS journey. I sat down with Kate Praska, RDMS, an obstetrics (OB) sonographer at Mayo Clinic who has 30 years of experience. While she primarily performs routine OB ultrasounds, she’s also board certified in fetal cardiac echocardiography. Below, she shares her thoughts on ultrasound technology, how the job has changed, and her connection to her patients.

Below is Part I of our interview — check back later this week for the concluding Part II!


 

Hi Kate, thanks for talking with me! Can you start by giving us an overview of fetal ultrasound? When is it done, what do you look for, what’s the process like?

Sure. While ultrasound can be used in a pregnancy as early as about 5 weeks gestation, the first scan is usually done in the first trimester around 7 weeks for dating, and the anatomy scan is done at 18-20 weeks. That scan is the most important because it’s essentially “baby’s first physical.” We do a very detailed evaluation of all anatomical structures to make sure the baby and pregnancy are progressing normally. At our site, we have been implementing a first trimester anatomy scan to evaluate for any large fetal defects.

If everything looks good and there are no other concerns, then patients might not have another ultrasound. So it’s incredibly important that we get a good look at everything during that visit.

 

What happens if you see something that doesn’t look right?

First and foremost, it makes me look at things more thoroughly. If I’m scanning and the heart looks funny, I’m going to look at everything that I possibly can on that baby. If I see a definitive heart defect, I tell the patient and then tell them I’m going to have the high-risk doctor come in and speak to them. The doctor comes in and talks to the patient, and then we call Cardiology to get them in for an echocardiogram as soon as possible.

Patients might get a little worried when I tell them we want to take a closer look at something, but I don’t want them to have a concern that we missed something or send them home thinking everything is perfect. I also want them to start preparing and thinking of questions to ask the doctor.

At some smaller clinics, the sonographers aren’t allowed to tell the patients anything, and they instead have to contact the obstetrician and have them arrange follow-up. Our clinic is an OB/Maternal Fetal Medicine department that has all high-risk specialties readily available to care for the patient (MFM doctors, nurses, genetic counselors, etc.). In the case of heart defect, we often times can get the patient in for a fetal echocardiograph that same day. But even if they can’t get in for an echo that day, that’s ok because they can usually see them within a few days. This gives them time for further testing and they can think about more questions, or make sure their significant other is there or bring an additional person so they have more sets of ears.

 

Most people can’t tell a head from a foot in an ultrasound. How hard is it to see HLHS in utero?

We can sometimes see it at the 20-week scan if we get a good picture. The best way to describe a lot of heart disease is that it’s “progressive.” For instance, I could scan a patient at 16 weeks and the heart could look normal. But sometimes it’s caught later as the rest of the heart is growing and one part isn’t. There are also some defects that don’t show up until the third trimester. Other times, a baby goes in for its three-month check-up, and they hear a heart murmur. Now, if they hadn’t seen it when the baby was a newborn, imagine us looking back at 20 weeks gestation.

There was one particular baby with HLHS that I scanned a few years ago. It was around 19 weeks and the four heart chambers all looked fine, but I just had an odd feeling. There was one view where the left outflow tract, which becomes the aorta, ballooned out a bit as it came out and the mitral valve seemed a little bright. I just didn’t feel comfortable, so I asked the high-risk doctor who suggested doing a fetal echocardiograph, and they were able to diagnose the HLHS.

Our policy now is that we only let one other person in the room during the scan. I’ve worked at places where they allowed more than one person, and if there are a lot of people, the room gets loud, and the mother might be turning her body to visit with relatives and laughing. Some people think it’s rude that we don’t allow more guests, but if I missed something on a baby, I would honestly feel horrific. It’s a medical procedure to thoroughly evaluate the fetus, mother, and pregnancy, and we need to be sure we can concentrate and do our job well.

 

Does diagnosing HLHS or other conditions in utero change the course of prenatal care?

Yes, and that’s why I’m very passionate about the heart in particular because early diagnosis means patients can get the treatment they need. In some cases, they can undergo surgical interventions in utero to correct a defect or help the heart grow better before birth. There are many fetal anomalies where an early detection completely changes the course of the delivery. These can include: genetic testing, more ultrasounds, specialty nursing care, social work, fetal surgery, or moving closer to a specialty hospital or clinic to deliver.

It’s also so important for a baby to be delivered at a specialty care center and have the right staff available. Some of these babies are taken to surgery right away or are put on medications and taken to the neonatal intensive care unit. If a baby is born at a small hospital or there’s no knowledge of the defect, it can be the difference between life and death.

 

How much has ultrasound changed?

It’s changed a lot. When I started, we really didn’t do any vascular scanning. It wasn’t until I was finishing my training, and a doctor asked me to go scan an adult liver using vascular ultrasound (I had no training because it was new), and I thought, “Sure, why not?” (laughs) So we learned as we went. I don’t really feel like the kids that are getting out now are any smarter than someone who’s been doing this for a long time has the experience and has seen everything. You know when something just feels “off.”

And ultrasound itself has progressed. When I started, we used to look at the back of the head for several structures but not the posterior fossa. For spinal defects, we looked at the spine. But I worked at a high-risk clinic in Seattle, and I remember calling my class friend and saying “We’ve got to be looking at the back of the head, because if the posterior fossa is abnormal, it means the spine is abnormal!” And we didn’t have the internet yet, so I sent her pictures in the mail and we incorporated everything new that we learned as ultrasound progressed.

 

Are the pictures better today?

Definitely, you can see a lot more. We look at the lens of the eye now, we’re trying to get better with the palate, we can see the lip pretty well. But in all honesty, I once missed a cleft lip and we went back and looked at my pictures and they looked totally normal. I asked the doctor how that was possible, and he explained that sometimes if there’s a cleft, the skin can fill the spot and it wouldn’t have been visible on ultrasound. So in the end, ultrasound “describes” it doesn’t “diagnose,” and it’s not perfect.

 

00375-1

Four-chamber view of HLHS at 30 weeks gestation in 2D (A) and color Doppler (B) imaging. In this case, the diminutive left atrium (LA) and left ventricle (LV) with wall hypertrophy are seen (A) and in color Doppler some blood filling of the LV is recognized in diastole (B). RV, right ventricle; RA, right atrium. https://obgynkey.com/hypoplastic-left-heart-syndrome-and-critical-aortic-stenosis/

 

Check back later this week for the concluding Part II!

 



The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Oct 7 11:01am · #ResearchRecap – Good Health Behaviors in Adults with CHD in HLHS

HLHS blog - health behaviors

 

Good health behaviors are defined as “actions that individuals take to maintain or enhance their health and reduce health risks” and are especially important for individuals with congenital heart disease (CHD), including hypoplastic left heart syndrome (HLHS).  But how likely are adults with CHD to actually maintain a heart-healthy lifestyle?  This week’s #ResearchRecap reviews an important and insightful study that aimed to answer that question.  (4 minute read)


Health behaviors reported by adults with congenital heart disease across 15 countries.
Holbein, et al., September 17, 2019
European Journal of Preventive Cardiology https://journals.sagepub.com/doi/full/10.1177/2047487319876231

 

Little is known about the details of important health behaviors in adults with CHD, and even less is known about these behaviors in countries around the world. Researchers in Belgium coordinated an extensive international study to start answering these questions. The study enrolled 4,028 patients in 15 countries on five continents: 2 in North America, 1 in South America, 8 in Europe, 3 in Asia, and Australia. The average age of participants was 32, 53% were women, and half had at least moderate CHD.

Participants completed several surveys and had their medical records reviewed. All data was collected from April 2013-March 2015. Patients were eligible to enroll if they were over 18, had been diagnosed with CHD before adolescence, and had not undergone a heart transplant. The study had three aims:

  1. Describe health behaviors in a large international sample of adults with CHD.
  2. Compare health behaviors in this sample across countries.
  3. Identify patient characteristic associated with health behaviors.

 

Description of Health Behaviors

Seven health behaviors were studied: binge drinking, cigarette smoking, recreational drug use, visiting the dentist at least once a year, brushing their teeth twice a day, flossing once a day, and regular physical activity. Patients were also asked to report their level of “functional status” using the New York Heart Association (NYHA) classes of heart failure ranging from Class I (no limitation of physical activity) to Class IV (unable to carry on physical activity without discomfort).

hb chart

The authors note that these findings are in line with previous research which suggests that “the health behaviors of adults with CHD may largely follow trends of the general population, with the presence of CHD having only a subtle impact.” Yet, they also point out that good health behaviors are especially important for adults with CHD given that “they are at higher risk than the general population for cardiovascular events.”

 

Comparison across Countries

Consistent with general population trends, adults with CHD reported higher rates of smoking and binge drinking in Australia and several Western and Northern Europe countries. Recreational drug use (e.g., cannabis, ‘ecstasy’, ‘speed’, ‘mushrooms’, cocaine) was highest in North and South America, while patients from India and Taiwan reported the lowest levels of substance use.

Western and Northern European countries had the highest rates of annual dental visits (84%), while India was the lowest (28%). Brushing and flossing varied widely across all countries; 64% of patients in the United States reported brushing twice a day and 33% reported flossing daily. For physical activity, the US and Asia reported the lowest rates of regular physical activity, while higher rates were seen in Western and Northern Europe.

It’s important to keep in mind that there are many reasons for differences in the rates of certain health behaviors across countries. The authors note that factors such as national level of development, cultural values, laws, and geographic barriers may result in patients being more or less likely to engage in certain behaviors. For example, personal use of cannabis is legal in several countries studied here, while other researchers have reported that most people in India don’t have access to basic dental care (Gambhir et al., 2013).

 

Individuals and Health Behaviors

For their third aim, the researchers correlated the seven health behaviors with demographics including age, sex, marital/cohabiting status, education level, defect complexity, and functional status. Patients who were younger, male, less educated, and had less complex CHDs were more likely to report binge drinking and smoking. Recreational drug use was more often reported by people who had worse functional status, were unemployed, and unmarried.

Remember: In studies like this, “correlation does not imply causation.” This means that we don’t know if being unemployed, unmarried, and having worse functional status causes someone to use recreational drugs, or if using drugs causes someone to have these characteristics. In this study, they were reported together more often, but there may be other causes that were not explored.

All three aspects of dental care were correlated with older age, higher education, and being female. Patients were less likely to report regular brushing and flossing if they had a worse functional status. This is especially concerning given that “CHD patients are at greater risk for cardiovascular complications including endocarditis (infection in the heart valves or lining of the interior surfaces of the heart)… and that dental problems are a leading cause of infective endocarditis.”

Participants in this study who reported regular physical activity were more often younger, male, employed/students, had higher education, less complex defects, and better functional status. The authors note that physicians have historically been reluctant to encourage physical activity in complex CHD patients. However, new research has shown that appropriate exercise and cardiac rehab can be beneficial for people with severe defects.

 

While many adults with CHD maintain a heart-healthy lifestyle, there are still areas for improvement that vary in specific areas across countries and individuals. This study provides important information for both medical providers and for the future development of programs to assess, educate, and improve access to good health behaviors for adults with CHD.

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Oct 7 9:37am · This Year’s Agenda for Feel the Beat! in HLHS

HLHS hearts

 

We’re in the home stretch – only five more days until Feel the Beat 2019! Be sure to RSVP if you haven’t already.

The agenda for the day is below.  And for those of you who can’t make it in person, we’re excited to share that we’ll once again have a livestream of the panels on our Facebook page! You can watch our Facebook Live video during or after the event on our page.

 


 

HLHS blog - agenda

 

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Sep 30 11:42am · Special Guests at Feel the Beat 2019! Part 2 in HLHS

family coor

The theme of this year’s Feel the Beat is “ELEVATE” – raising awareness and celebrating how research enhances the lives of individuals with HLHS! One area we’ll be raising awareness of and showing our appreciation for is the people who make research possible. One of our guest panels this year will feature patients and families from across the HLHS Consortium who participated in our Phase I stem cell delivery trial, and the Clinical Research Coordinators who have been a part of their journey! Our work wouldn’t be possible without the generosity, motivation, and hard work of these important people.

Make sure to RSVP here if you haven’t already!

 

The Pieper Family & Somya Shankar — Children’s Hospital of Philadelphia
pieper somya

The Pieper Family lives in central Pennsylvania. Their son Wyatt was diagnosed in utero with HLHS and born at CHOP where he successfully underwent the Norwood procedure. The Piepers returned to CHOP for Wyatt’s Stage II Glenn procedure, where the delivery of Wyatt’s autologous stem cells was performed in December 2018. The Piepers’ relationship with the HLHS Program has evolved over time. Upon diagnosis, the Piepers found resources online to help explain the defect, although they quickly moved on to studying research in scientific journals provided by the HLHS Program. Having the opportunity to participate in the Program’s Phase I autologous stem cell study was a key component of the Pieper family’s decision in where to receive care. Today, Wyatt loves to attend music class and play in pools. Katie and Rob enjoy reading, cooking, playing frisbee, and spending time outside.

 

Originally hailing from just outside of the nation’s capital, Somya graduated from the College of William & Mary in 2018 with a Bachelor’s degree in Chemistry. Since then, she has been working as a research coordinator at CHOP and will be applying to medical school this year! Her connection to HLHS comes through her work on the Umbilical Cord Blood Collection and Stem Cell Delivery studies. In her spare time, Somya loves to travel, listen to podcasts, and go on long walks with her dog. Somya truly enjoys getting to know the many families who participate in the studies at her site, and looks forward to meeting even more members of the HLHS community here at Feel the Beat 2019.

 

The Strand Family & Juanita Taylor — The Children’s Hospital at OU Medicine
Strand juanita

The Strand Family lives in central Iowa. Their son Charlie was diagnosed in utero with HLHS, and they learned after birth that he also has Aortic Stenosis and Mitral Atresia. Charlie was born at OU Children’s Hospital in Oklahoma City in July 2017. His cardiothoracic surgeon, Dr. Harold Burkhart, performed the Pulmonary Banding, Norwood, and Glenn open heart surgeries. During his Glenn surgery, Charlie became the eighth infant to receive autologous stem cells on the Phase I Clinical Trial. Charlie turned two this summer and is currently doing very well readying himself for the Fontan surgery. According to his parents, Charlie is ALL boy, has a wonderful, spunky personality, and is definitely a miracle.

 

Juanita Taylor is a Nurse Navigator for Oklahoma Children’s Heart Center. She has been a nurse navigator for four years and a member of the Heart Center for fifteen years. Juanita lives in Choctaw, OK right outside of Oklahoma City. When she isn’t passionately advocating for families with HLHS and other congenital heart conditions, she dedicates all her spare time to her own family and planning her wedding in October! Juanita has a new granddaughter and is blessed to have a seven-year-old grandson and 4-year-old granddaughter through her fiancé.

 

The Gutman Family & Karen Miller — Mayo Clinic
gutman karen

The Gutman Family lives in northern Ohio. Their son, Luke, was diagnosed in utero with HLHS and treated at Mayo Clinic, and was the second infant to receive the stem cell delivery. Jennifer works as a Service and Support Administrator to help coordinate services for people with developmental disabilities. She joined the organization after it helped Luke reach his milestones through in-home therapy sessions. Learning how to advocate for Luke’s needs led Jennifer to want to advocate for others born differently abled. Jennifer herself is a “rainbow baby” who was born after her older brother with HLHS passed away due to complications from his Norwood surgery. Jennifer’s hobbies include gardening, fishing, boating, and trying to keep up with their two little boys!

 

Karen has been a coordinator for the HLHS Program at Mayo Clinic since 2014. As a clinical research coordinator, Karen works with families who have a child diagnosed with HLHS and want to participate in the Program’s clinical trials. Some of her responsibilities include study recruitment, ensuring that participants understand and voluntarily consent to participate, and assisting families while they are here for their research visits. Karen lives with her family on her family’s dairy farm outside of Rochester. In her spare time, she loves to go antiquing, spend time in her garden, and travel.

 

Stay tuned next week for more details on #FTB2019!

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.