Did you know?
Up to 2,500 babies die suddenly and unexpectedly each year, and up to 1/3 of SIDS cases may be explained by an inherited medical problem.
If you, or someone you know, has recently lost a child to SIDS, genetic testing can be useful to check if your baby had an undiagnosed medical problem that caused the sudden death.
Why is genetic testing important?
When a baby dies suddenly and unexpectedly, families need answers. Genetic testing can provide answers in some situations. If genetic testing reveals your baby had a medical problem that may have caused sudden death, genetic testing should be considered for parents and other family members to check if they have the same medical condition. If parents are planning to have other children, this information can be especially valuable for their next baby.
How we can help?
At Aeron’s Foundation, our vision is to build a future free from the suffering caused by SIDS. We would like to help families find answers. We work closely with the Los Angeles Coroner’s Office and several genetic testing programs to help families get testing for their babies as soon as possible. We are happy to help pay for any costs so that families can get these important answers for free.
Roberts Program at Boston Children’s Hospital performs state-of-the-art research into sudden unexpected death in children. As part of their research, they provide detailed genetic testing and counseling for families. They also have other valuable resources, such as grief support and continued updates as new research develops. The genetic testing results are estimated to take 6-9 months through the Roberts Program. If you would like to contact them directly, email: robertsprogram@childrens.harvard.edu
Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. Through Invitae, Aeron’s Foundation can order testing for your baby to check for the most common heart and brain conditions currently known to cause sudden death.
Cardiogenomics Program at Children’s Hospital Los Angeles
CHLA has a team of doctors and genetic counselors who are experts in taking care of families with inherited heart conditions (including heart conditions that cause sudden death). If your baby has genetic testing results that are worrisome, needs more explaining, or requires further testing for family members, the CHLA Cardiogenomics Program may be helpful for you. If you are interested in making an appointment, ask your child’s doctor to make a referral, or call: 323-361-2461 to make an appointment directly.
If you have more questions about genetic testing that is not answered here, or you would like to request help with getting genetic testing, please email info@aeronsfoundation.org
References
- Neubauer, J., Lecca, M., Russo, G. et al.Post-mortem whole-exome analysis in a large sudden infant death syndrome cohort with a focus on cardiovascular and metabolic genetic diseases. Eur J Hum Genet 25, 404–409 (2017). https://doi.org/10.1038/ejhg.2016.199
- Towbin JA et al. 2019 HRS Expert consensus statement on evaluation, risk stratification, and management of arrhythmogenic cardiomyopathy. Heart Rhythm. doi:10.1016/j.hrthm.2019.05.007
- Al-Khatib SM et al. 2017 AHA/ACC/HRS Guideline for management of patients with ventricular arrhythmias and the prevention of sudden cardiac death: A report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines and the Heart Rhythm Society. J Am Coll Cardiol. 2018;72:e91-e220.
- Priori SG et al. HRS/EHRA/APHRS expert consensus statement on the diagnosis and management of patients with inherited primary arrhythmia syndromes.. Heart Rhythm.2013;10:1932-63.
- Gersh BJ et al. 2011 ACCF/AHA guideline for the diagnosis and treatment of hypertrophic cardiomyopathy: Executive summary. J Am. Coll Cardiol. 2011;58:2703-38.
- Ackerman MJ et al. HRS/EHRA expert consensus statement on the state of genetic testing for the channelopathies and cardiomyopathies. Heart Rhythm.2011;8;1308-39.
- Hershberger, RE et al. Genetic Evaluation of Cardiomyopathy-A Heart Failure Society of America Practice Guideline. Card. Fail. 2018;24,281-302.