Hypoplastic Left Heart Syndrome Resources for Families

Finding out your child has hypoplastic left heart syndrome (HLHS), and learning how to manage it, can be overwhelming. It's important to understand the condition, communicate your concerns, recognize your options and know what questions to ask your doctor.

Karla's list of questions to ask your cardiac surgeon

Karla, a mom whose 3-year-old son has HLHS, knew how important it was to keep a running list of questions for each appointment so she would remember what to ask. She shares her list of HLHS questions that parents of newly-diagnosed children might forget - or not even know - to ask.

Questions to ask when your child is diagnosed with HLHS

1. Now that I know my child has a heart defect, what are the next steps?
2. What are the treatment options for HLHS?
3. Why is your center the best option for my child?
4. How many surgeries do you perform each year for the Norwood, Glenn and Fontan?
5. How often will I need an ultrasound or echocardiogram during my pregnancy?
6. Can you explain the surgical procedures my child will need?
7. How am I included in the decision making for my child?
8. What are your outcomes and survival rates for the Norwood, Glenn and Fontan procedures?
9. Do you have resources to help families cope with a diagnosis like HLHS?
10. Are there support groups for parents?
11. Can you connect me with other HLHS families?
12. What kind of support and resources do you have for siblings?

Questions to ask your cardiac surgeon before your child's HLHS surgery

1. How long is a typical hospital stay after each surgery?
2. What is the difference between pediatric anesthesia, cardiac anesthesia and general anesthesia?
3. Do oxygen saturation levels improve after each surgery?
4. How long will my child need to be on oxygen after each procedure?
5. What kind of monitoring and support do you offer between the Norwood and the Glenn?

Questions to ask after all HLHS surgical procedures

1. How often do we need to schedule follow-up visits?
2. How long do you follow and support my child?
3. What will life look like for my child a year or two from now?
4. Is it safe for my child to run and play after they recover from each surgery?
5. Will my child have psychological delays or other problems we should be aware of as they get older?
6. What kind of feeding and nursing support do you offer?
7. What can I do to help my child have a successful recovery?

Download the questions (.pdf).

Karla and Derick's son was diagnosed with hypoplastic left heart syndrome (HLHS) before he was born. This meant that after his birth, he would need three cardiac surgeries to help fix his heart defect.

Throughout this experience, Karla found ways to work through the process. For new parents, she shares her own list of tips for handling your child's surgeries, as well as some words of wisdom from her own journey.

Karla's top HLHS tips

1. Take notes when speaking with your child's doctor to make sure you have the information correct. The doctor will also provide a packet of information for you to read at home. You will find answers to questions that arise over time and tell you what to expect going forward.
2. After the Glenn procedure, "Glenn Head" is common. It is like having a severe headache or migraine, which is caused by your child's new circulatory system. The pain lasts a few weeks. If your child seems uncomfortable, cries often and rubs their head, most likely they are experiencing Glenn Head. The best way to provide relief is with ibuprofen or Tylenol.
3. After the Fontan procedure, your doctor typically schedules appointments for six-month check-ups. If you are worried or have a problem prior to that, take your child in for an appointment sooner than the next scheduled check-up. "We only made it through a full six-month period one time; we took him in for check-ups more often if we had a major concern," Karla shares.
4. Keep a running list of questions for your doctor and make sure you bring that list with you to each appointment.
5. Take care of yourself during this process. While at the hospital with your child, pack a survival kit including snacks, comfortable clothes and a phone charger, for example.

Karla's words of wisdom

1. Going into each of the surgeries, trust your instincts. Everyone's instincts are different, so listen to what yours are telling you.
2. Know that you will have your happy baby back after the procedures are complete. You may notice your child is even happier after the surgeries than before because they will have more energy.
3. Remember the rough patches don't last forever. As your child heals and gets older, they will play with more energy, eat better, and will more likely take part in outdoor activities.
4. Try to avoid daycare, as illnesses at a young age are harder on children with hypoplastic left heart syndrome than on kids without heart defects.
5. You can address concerns without going to the emergency room. You can call the single ventricle coordinator at 720-777-2943 or the main Heart Institute number at 720-777-6820 to speak to one of the doctors or the on-call doctor if it is after hours.
6. Say yes to any help that your friends and family offer. Also, ask for specific help if you need something that hasn't been offered.
7. This journey is hard, but these kids have incredible strength and fight in them. We call them Heart Warriors for a reason. They will show you true courage and strength, and in turn, they will help you find your own.

Download Karla's HLHS tips (.pdf).

The Pediatric Congenital Heart Association (PCHA) compiled a list of important questions to ask your child's cardiac care team. Read these questions – and our answers – to help you make decisions about the care of your child.

American Heart Association

The American Heart Association has important information about heart disease and how far we have come with medical advances for cardiac care. They provide public health education to improve the lives of all Americans and help them understand the importance of living a healthy lifestyle. Founded by six cardiologists in 1924, the American Heart Association is the nation's oldest and largest voluntary organization dedicated to fighting heart disease. The Denver American Heart Association office also has a variety of educational information, research and online tools. You can also get involved by volunteering at events or contributing to their online community.

Pediatric Congenital Heart Association

The mission of this heart-felt organization is to "Conquer Congenital Heart Disease." The Pediatric Congenital Heart Association provides helpful information, educational tools and facts about congenital heart disease. They have an extensive research section about how they are working toward reaching their mission. Becoming a part of their advocacy program will connect you with other heart patients, doctors, researchers and lawmakers committed to conquering congenital heart disease. You can also read stories from other families who have children with a heart defect and share your own story on their website as well. Telling your story is often part of the healing process.

Cardiac Kids Group at Children's Hospital Colorado

Cardiac Kids is a support group for families of patients with HLHS and other heart conditions to help one another through times of need. This group provides a new and helpful perspective on what it's like to manage a congenital heart disease. Many of these volunteers are former patients or parents of children treated here. Being a part of this group has helped families share stories and get assistance through the healing process. You can get involved in the activities and meet-and-greet events that are held throughout the year. Weekend conferences are also held every fall and are open to the public.

Congenital Heart Information Network

The Congenital Heart Information Network is a national organization that delivers reliable information, resources, advocacy, financial assistance and support for families and adults. Check out their Facebook page to see what is being done in the medical field to help combat congenital heart disease, and read other stories that will inspire and encourage you through your own battle.

Little Hearts

Little Hearts provides support, education, resources, and networking to families whose lives have been affected by congenital heart defects. Along with printed information to help educate and provide awareness, Little Hearts also holds meetings where families can have discussions, share ideas, get support and give help to other families just starting on the journey. They organize events like picnics and awareness day activities and have different types of support services including a discussion board, fundraising ideas, email group and parent matching program.

Cardiac Neurodevelopmental Outcome Collaborative

This nonprofit organization was created to provide neurodevelopmental and psychosocial services for individuals with congenital heart defects and their families. Cardiac Neurodevelopmental Outcome Collaborative's mission is to be a multidisciplinary group of healthcare professionals, who work with families in the areas of neurodevelopment. By visiting their website, you will learn about their research, quality improvements and clinical care program.