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Congenital heart defects (CHD), the most common birth defects, affect the development of the heart. The cause of a congenital heart defect are not always known. Some associated factors may include a genetic anomaly, a mother’s health, or exposure to medication or smoking. Congenital heart defects generally develop at or before the 6th week of pregnancy when the heart and blood vessels begin to form. The symptoms of congenital heart defects vary, but after birth may include tiredness while feeding, sleepiness, difficulty breathing, and blue-tinted lips and nails. Associated conditions include blood clots, arrhythmia, developmental disorders, pneumonia, stroke, heart failure, pulmonary hypertension, endocrine issues, and emotional problems. Congenital heart defects occur in 1 in 120 live births.
Six common types of congenital heart defects are: DiGeorge syndrome, hypoplastic left heart syndrome, patent ductus arteriosus, pulmonary stenosis, atrial septal defect, and ventricular septal defect. More information and support related to these specific conditions can be found in the Sources and Diagnosis-Specific Support sections below.
Many congenital heart defects can be diagnosed during a routine ultrasound or by listening to the fetal heartbeat. If a CHD is detected, doctors may recommend a cardiac ultrasound (echocardiography) or an MRI. Genetic testing may be performed after birth to determine the cause of the defect.
Most heart defects are treatable with very positive results. Depending on the type of congenital heart defect, there may be several different treatment options before and after birth, including prenatal surgery in utero or within the baby’s first year to repair the defect. Cardiac catheterization is one common procedure that repairs some heart defects by inserting a catheter into a vein and guiding it to the heart. Heart replacements or the insertion of a ventricular assistance device or artificial heart may also be required to treat a defect. Another treatment may involve prescribing medication to the mother while her unborn baby is in utero. Some children may grow out of simple heart conditions as they develop.
Medical advances are continually improving treatment options and outcomes so consulting with specialists and major children’s hospitals may be beneficial to finding the best possible care.
Palliative care programs are available to support infants and their families for parents who may not be able to pursue medical interventions for their child with a life-limiting condition. They may ask their medical team for more information about perinatal palliative care programs that are available to them.
I need help understanding my diagnosis.
Below are additional support resources that may be helpful.
What are Congenital Heart Defects? | CDC Congenital Heart Defects | NHLBI, NIH Congenital Heart Defects | Johns Hopkins Medicine Congenital heart defects in children - Symptoms and causes - Mayo Clinic Congenital Heart Disease | Children's Hospital of Philadelphia (chop.edu) Congenital Heart Disease (CHD) in Children | Children's Hospital of Philadelphia (chop.edu)https://www.cdc.gov/ncbddd/heartdefects/hlhs.html https://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs DiGeorge syndrome (22q11.2 deletion syndrome) - Symptoms and causes - Mayo ClinicFetal Cardiac Arrhythmia | Pavilion for Women (texaschildrens.org)Congenital Heart Defects | NHLBI, NIHMalloy C, Wubbenhorst MC, Lee TS. The perinatal revolution. Issues Law Med. 2019 Spring;34(1):15-41. PMID: 31179670.
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This website provides hope to other families who are faced with a HLHS diagnosis for their unborn baby. There is no right or wrong decision, and each family must make the choice they feel is best for them. The one thing we all have in common is that we love our babies with the utmost love a parent can have; and our decisions are made out of the purest love for our child. My hope is to spread awareness that comfort care is an option and should be an option for HLHS babies.
Little Hearts, Inc. is a national organization dedicated to providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
The Mended Hearts® program is the nation’s premier peer-support program for patients who have cardiovascular disease, their caregivers and their families. Since its humble beginning in 1951, Mended Hearts has served millions by providing support and education, bringing awareness to issues that those living with heart disease face, and advocating to improve quality of life across the lifespan.
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
This group is for parents who have chosen or are choosing comfort care for their newborn diagnosed with HLHS. The options often presented to families are palliative surgery, termination, or comfort care/hospice. This group provides a safe place for parents to come together and talk about their babies, journey, grief, and our choice for hospice.