HLHS

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The 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.

Contact the program at HLHS@mayo.edu.

PUBLIC PAGE
May 26, 2017

New study highlights the importance of genetics research

By Suzanne Ferguson @suzannerferguson
An exciting paper was recently published in Nature Genetics titled “The complex genetics of hypoplastic left heart syndrome”.  This elegant study was led by a research team at the University of Pittsburgh School of Medicine and highlights the creation of the first mouse models of hypoplastic left heart syndrome (HLHS). [...]
New study highlights the importance of genetics research
May 15, 2017

Share the Science: Strengthening the HLHS Heart with Cord Blood

By Suzanne Ferguson @suzannerferguson
Join Dr. Nelson, director of the Todd and Karen Wanek Family Program for HLHS, this Wednesday, May 17 at 2 p.m. CT to learn more about using umbilical cord blood stem cells to potentially strengthen the heart. The free webinar is hosted by Save the Cord Foundation and Mediware, Inc. [...]
Share the Science: Strengthening the HLHS Heart with Cord Blood
May 5, 2017

Mayo Clinic’s Fontan procedure study shows improvement in survival rates

By Suzanne Ferguson @suzannerferguson
Mayo Clinic recently published the largest single center study on the outcomes of the Fontan procedure. The goal of the study was to determine how well patients were doing 10, 20 and 30 years after a Fontan procedure at Mayo Clinic. The most promising result from the study shows that [...]
Mayo Clinic’s Fontan procedure study shows improvement in survival rates
Apr 17, 2017

Congratulations to the 2017 IMPACT Winners!

By Suzanne Ferguson @suzannerferguson
On March 18, the Innovative Minds Partnering to Advance Curative Therapies (IMPACT) program engaged over 200 undergraduate students from 23 different Minnesota colleges. IMPACT is a competitive program open to Minnesota undergraduate students that encourages them to submit hypotheses for different challenges. It is sponsored by Regenerative Medicine Minnesota and [...]
Congratulations to the 2017 IMPACT Winners!
Apr 10, 2017

Dr. Nelson featured on "Heart to Heart with Anna"

By Suzanne Ferguson @suzannerferguson
Dr. Nelson was recently featured on the radio show “Heart to Heart with Anna” to discuss the work our program is doing to delay and prevent heart failure for individuals with HLHS. Dr. Nelson and Anna discuss the clinical trial using umbilical cord blood as well as the clinical trial [...]
Dr. Nelson featured on
Mar 13, 2017

Mayo Clinic to host undergraduate students at IMPACT Symposium on March 18

By Suzanne Ferguson @suzannerferguson
The Innovative Minds Partnering to Advance Curative Therapies (IMPACT) Program at Mayo Clinic will hold their fourth annual IMPACT Symposium this Saturday, March 18 from 9:00 a.m. until 5:00 p.m. at Mayo Clinic in Rochester, Minnesota. The IMPACT Symposium is a daylong conference for students to pitch their innovative hypotheses [...]
Mayo Clinic to host undergraduate students at IMPACT Symposium on March 18
Feb 21, 2017

HLHS Program is now able to collect and store umbilical cord blood

By Suzanne Ferguson @suzannerferguson
Here at the Todd and Karen Wanek Family Program for HLHS we are excited to announce that we are now able to collect, process, and store umbilical cord blood (UCB) from HLHS babies to be potentially used for clinical trials in the future. After a baby is born and the [...]
HLHS Program is now able to collect and store umbilical cord blood
Feb 7, 2017

CHD Awareness Week February 7-14

By Suzanne Ferguson @suzannerferguson
Congenital Heart Defect (CHD) Awareness Week starts today and goes through the 14th of February. CHD Awareness Week is a special week dedicated to raising awareness and support for individuals with CHDs. In honor of the week, our program will be sharing information on social media about research findings, helpful [...]
CHD Awareness Week February 7-14
Feb 1, 2017

#AsktheMayoMom Facebook Live Tomorrow at 10 am CT

By Suzanne Ferguson @suzannerferguson
Join us tomorrow at 10 am CT for an #AsktheMayoMom Facebook Live session about hypoplastic left heart syndrome (HLHS) with Dr. Angela Mattke, pediatrician, and Dr. Timothy Nelson, pediatric cardiologist and director of the Todd and Karen Wanek Family Program for HLHS. http://mayocl.in/2jVbQu0   The Todd and Karen Wanek Family [...]
#AsktheMayoMom Facebook Live Tomorrow at 10 am CT
Dec 20, 2016

Helping the HLHS Heart Grow Stronger

By Suzanne Ferguson @suzannerferguson
Our main goal at the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome(HLHS) is to delay and prevent heart failure for individuals with HLHS. The video below discusses how we are using stem cells to grow the heart stronger. https://www.youtube.com/watch?v=X45CDIrntuc&feature=youtu.be For any questions, please email us at [...]
Dec 1, 2016

HLHS Pullovers

By Suzanne Ferguson @suzannerferguson
*Update: We have received many requests to reopen the ordering for the pullovers. Please see the information below.* We received quite a few requests regarding our HLHS pullovers so we have now made them available for purchase. Make sure to place your orders by December 9!   To order pullover [...]
HLHS Pullovers
Nov 29, 2016

HLHS Health Journal – New App to Keep Track of Health

By Suzanne Ferguson @suzannerferguson
The Todd and Karen Wanek Family Program is excited to announce a new collaboration with Sisters by Heart and Empatheia to provide the HLHS Health Journal, a new app for individuals and families to help keep track of important daily vitals and improve clinical care. HLHS Health Journal makes it [...]
HLHS Health Journal – New App to Keep Track of Health
Nov 16, 2016

HLHS Survivors Come Together in Annual Celebration of Life

By Suzanne Ferguson @suzannerferguson
Once upon a time, "happily ever after" wasn't a phrase associated with hypoplastic left heart syndrome, or HLHS. For many years, parents were simply advised to make the most of their brief time with children born with the rare heart defect. That's one of the reasons the annual "Feel the [...]
HLHS Survivors Come Together in Annual Celebration of Life
Nov 4, 2016

Mayo Clinic HLHS is now on Instagram!

By Suzanne Ferguson @suzannerferguson
Head on over to Instagram to follow us @MayoClinicHLHS to learn more about the ongoing HLHS research, stay up-to-date on ways to participate in transforming the future of HLHS, and read HLHS patient stories. While you are on Instagram, check out the fascinating video we have of beating cardiomyocytes, also [...]
Mayo Clinic HLHS is now on Instagram!
Oct 27, 2016

Protecting Against the Flu and RSV

By Suzanne Ferguson @suzannerferguson
It’s that time again. The leaves are starting to change to vibrant colors of orange, red, and yellow. The chilly weather prompts you to dig out your cozy sweaters and warm jackets, and every store and coffee shop have begun selling pumpkin flavored goods. Unfortunately, that also means flu season [...]
Protecting Against the Flu and RSV

Has your unborn baby been recently diagnosed with hypoplastic left heart syndrome (HLHS)?

HLHS is a rare heart defect, affecting 1,000 newborns each year in the United States, in which the left side of the heart is severely underdeveloped, and the right side of the heart must pump blood to both the lungs and the body. The defect occurs during fetal growth and currently cannot be prevented.

Treatment normally involves a three-stage surgery to reroute blood flow in the heart. While the surgeries are life-saving and effective, they do not eliminate the possibility that an individual with HLHS may need a heart transplant in the future.

By collecting and banking your baby’s umbilical cord blood (UCB) at Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS, you make it possible for your child to participate in future clinical trials using stems cells from your baby’s own body. The goal of the clinical trials is to strengthen the heart using stem cells.

Contact the program today to learn more or to receive your free collection kit at HLHS@mayo.edu.

 

 

 

April 2017

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Feel the Beat 2016

Thank you to all who attended our fourth annual Feel the Beat event on Saturday, October 8. It was a fun-filled day focused on collaboration that brought together patients, families, advocates, researchers, and doctors from over 15 different states. ftb-collage Some of the highlights from the day include learning firsthand about the exciting research taking place during the research science fair, hearing from inspiring and informative guest speakers (Meagan Broucek, Christina DeShaw, Kelly DiMaggio, and Stacey Lihn), and learning about how the future of HLHS is transforming as new collaborations are being formed. For those of you who were unable to attend either in person or online, you can watch the speakers below.

Watch the Feel the Beat 2016 guest speaker panels.

Thanks to all who attended to make our fourth annual Feel the Beat event the best one yet! See you next year at the fifth annual Feel the Beat event on October 14, 2017!

Todd and Karen Wanek Family Program for
Hypoplastic Left Heart Syndrome

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. As pioneering surgeries and evolving medical practices have dramatically changed the outlook for children with HLHS in the past two decades, many young adults have now successfully overcome the challenges of reconstructive heart surgeries. The emerging obstacles now drive our team with a new focus and purpose to transform treatment options.

                                                                        HLHS Team Members

We are a multidisciplinary research team devoted to finding better solutions for individuals affected by HLHS. Our team includes physicians, scientists, study coordinators, project managers, laboratory personnel, and administrative partners. Led by Dr. Timothy Nelson, a physician/scientist in the Transplant Center with a passion for stem cell-based applications. Other programmatic leadership includes Dr. Timothy Olson, a pediatric cardiologist with a strong track-record in the genetics of heart disease, Dr. Patrick O’Leary, a pediatric cardiologist who specializes in cardiac imaging of congenital heart disease, and Dr. Andre Terzic, director of the Center for Regenerative Medicine who has pioneered clinical applications for stem cells in cardiac repair. Collectively, our goal is to determine the genetic cause of HLHS, predict lifetime function of the right ventricle, and develop a regenerative solution to keep the right ventricle healthy throughout life.

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Recently Diagnosed

Hypoplastic Left Heart Syndrome

Your unborn baby has been diagnosed with Hypoplastic Left Heart Syndrome. What does this mean for your baby and your family?

Q. What is Hypoplastic left heart syndrome (HLHS)?

A. HLHS is a rare heart defect, affecting 1,000 newborns each year in the United States, in which the left side of the heart is severely underdeveloped, and the right side of the heart must pump blood to both the lungs and the body. The defect occurs during fetal growth and currently cannot be prevented.

In a healthy heart, the right side of the heart accepts blood from the rest of the body and pumps it to the lungs while the left side of the heart accepts blood from the lungs and pumps it to the body.When the left side of the heart is underdeveloped, the right side must perform both functions, pumping blood to the lungs and to the body.

During the first few days after a baby is born, the right side of the heart is able to do the job of both the right and left sides because of two processes. The first is through an opening, known as the foramen ovale, by which the blood flowing through the lungs can return to the right heart. The second process is by a blood vessel connecting the pulmonary artery to the aorta, known as ductus arteriosus, that allows the right side of heart to pump blood to the body in addition to the lungs. The majority of the time, the foramen ovale and ductus arteriosus close after a few days, leaving the heart with no way to pump the blood to the rest of the body.
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Q. What causes HLHS?

A. At this time, the cause of HLHS is unknown and there is nothing to prevent it. The birth defect occurs in utero while the baby is developing. There is a very slight increased risk (less than ten percent) that families who have one child born with HLHS will have another child born with a heart defect.

Q. How is HLHS diagnosed?

A. Doctors will use an echocardiogram, also known as an ultrasound, to diagnose the heart defect. HLHS is often diagnosed in utero using a fetal echocardiogram.

Q. Will my baby need surgery?

A. Doctors will determine the exact treatment for your baby depending on the severity of the heart condition and the family’s wishes. The only treatment for HLHS is aggressive, early surgical intervention. The most common approach involves a three-stage surgical procedure. The operations are performed within the first few years of life and create reliable blood flow in and out of the functional heart chambers.

Stage 1: Norwood Procedure

The Norwood procedure is performed within the first few days of life to allow the heart’s lower right chamber, known as the right ventricle, to pump blood to the lungs and the body.

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Stage 2: Glenn Procedure

The Glenn (or hemi-Fontan) procedure usually takes place between four and six months of a child’s life. The surgery reduces the amount of work the right side of the heart does by allowing it to pump blood mainly to the body and routing part of the blood returning from the body directly into the lungs.

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Stage 3: Fontan Procedure

The Fontan procedure is performed on patients between 18 and 48 months old to connect the remaining blood vessels carrying blood from the body to the lungs. The purpose of this surgery is to allow the blood coming from the body to go directly to the lungs, normalize the oxygen levels, and reduce the right ventricle workload to the approximate levels of a normal heart.

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Q. What happens after surgery?

A. After surgery, HLHS children need long-term surveillance of the reconstructed heart and often require heart medications. Regular appointments with a cardiologist will include echocardiograms, MRIs, blood tests, and heart catheterizations to ensure close monitoring of your child’s growing heart.

Q. What are the long term impacts of HLHS?

A. While science has made remarkable steps in treating patients with HLHS there is still no cure. Most patients will survive with treatments but may face other complications later in life. Some of these complications include heart arrhythmias, blood clots, developmental problems, and the possibility of future surgeries or a heart transplant. For more on this subject, please visit here.

Q. Are there new scientific advances that will help my baby in the future?

A. At the Mayo Clinic, we are making advancements to find new ways to treat HLHS through the use of four connected objectives: cell-based treatments, imaging and outcome, human genetics, and the creation of a biorepository. These advancements may delay and even prevent heart transplants for people with HLHS.

Cell-Based Treatments

Researchers believe stem cells can increase the strength of the heart, enabling it to pump blood through the body with greater power. By using cell-based therapies, team members are working to make the heart muscle stronger. This approach could possibly restore the right ventricle’s functional ability once it begins to decline or prevent the decline altogether.

The Todd and Karen Wanek Family Program for HLHS currently offers clinical trials to individuals with HLHS. The goal of the trials is to determine how stem cells derived from different sources in the body, delivered at different times, can strengthen the heart of individuals with HLHS. In one clinical trial, umbilical cord stem cells are collected after birth and delivered directly into the heart muscle during the Glenn procedure. Another clinical trial uses stem cells collected from an individual's own bone marrow to be injected into the heart.

Another use of stem cells includes comparing reprogrammed stem cells from children with HLHS and their unaffected parents to determine molecular differences in order to understand how HLHS develops.

Imaging and Outcomes

To better understand HLHS and the predictors of long-term right ventricular performance, researchers are comparing medical histories of HLHS patients by using ultrasounds and MRI images of their hearts. In addition, researchers are also improving the ability to assess right ventricular function noninvasively to detect declines in cardiac function as soon as possible so they can intervene in a timely manner.

Human Genetics

HLHS is likely caused by abnormal genes that result in the underdevelopment of the heart’s left ventricle. While those genes are currently unknown, researchers are analyzing whole-genome sequencing and bioinformatics to search for HLHS genetic variations. They are also attempting to detect changes in chromosomal material in people with HLHS.

Biorepository

By working with families to collect family histories, tissue and cell samples, genomic information and heart images of HLHS patients and their relatives, researchers are studying HLHS and creating a biorepository. The biorepository includes clinical and genetic data, as well as tissue and other physical specimens used to further study HLHS and to explore new treatment options.

HLHS Videos

New Clinical Trial Using Bone Marrow Stem Cells

Using Stem Cells for HLHS Research

New Clinical Studies Using Stem Cells

Studying Genetic Causes of HLHS

Congenital Heart Disease

Pioneering Treatment for Hypoplastic Left Heart Syndrome - Mayo Clinic

A Piece of My Heart, From My Arm

Mayo Clinic First in U.S. Testing Stem Cell Use in Pediatric Congenital Heart Disease Trial

Bill Weir promos upcoming Nightline special on stem cells

Stem Cells 101 - Mayo Clinic

Hypoplastic Left Heart Syndrome: Surgical Management and Stem Cell Therapy (Part 2) - Mayo Clinic

Tim Nelson's Story

Dr. Tim Nelson

Support

The goal of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome is to translate hope into solutions by offering the latest advancements to people with HLHS with the ultimate goal of delaying, or even preventing, heart failure.

Every dollar of your tax-deductible gift to the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome funds lifesaving research, outstanding patient care and critical medical education.

Click Here to Donate

If you would like to make a donation by phone or if you have any questions, please call 855-852-8129.

Welcome to the umbilical cord blood collection resource page! We hope that you, as providers, will find the video below a very helpful resource in collecting umbilical cord blood for the HLHS clinical trial. If you have any questions, please feel free to contact us at hlhs@mayo.edu.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The 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. Contact the program at HLHS@mayo.edu.

Participate

To participate in the research that is changing the future for individuals with HLHS, contact our program by emailing us at HLHS@mayo.edu.

Open clinical trials

Safety Study of Autologous Umbilical Cord Blood Cells for Treatment of Hypoplastic Left Heart Syndrome

Phase I Safety and Feasibility Study of the Intracoronary Delivery of Autologous Bone Marrow Derived Mononuclear Cells

Open research studies

Genetics: The goal of this study is to identify abnormal genes that may cause the underdevelopment of the left ventricle. We analyze the DNA of the HLHS patient, their immediate family members, and sometimes extended family members. This is done by collecting a blood sample from each participating family member.

Imaging: This study uses echocardiogram and MRI images to assess the function of the right ventricle. An HLHS patient has an echocardiogram and/or MRI, X-ray, and clinical exam performed by a pediatric cardiologist and an echocardiogram is done on the biological parents and siblings. All of the imaging findings are made available to you and the HLHS patient’s home cardiologist.

Regenerative Strategies: Participation in this study involves collecting a small piece of discarded skin tissue when there is a clinically planned surgery, or from a skin punch biopsy. The goal is to "reprogram" the skin cells into cardiac tissue. We are collecting tissue from the patient with HLHS, both biological parents, and eligible siblings (age dependent).

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