Brain Anomalies
If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our trained consultants to determine if parent care coordination would be helpful for you.
Description
Brain anomalies occur when the skull or brain develops abnormally in utero. There are a variety of conditions and disorders that are considered brain anomalies including Chiari 1 malformations, craniosynostosis, encephaloceles, arachnoid cysts, hydrocephalus, and syringomyelia. Brain anomalies vary and can range from mild to severe, but symptoms after birth may include delayed growth, pain, progressive loss of bodily function, loss of strength and movement, and cognitive weakness. In many cases the cause of brain anomalies is unknown. However, genetics, viral infection, and exposure to substances like drugs, alcohol, toxins, and certain medications can contribute to brain anomalies.
Screening and Diagnosis
Brain anomalies can often be detected via chorionic villus testing, ultrasound and a follow-up fetal MRI scan. Amniocentesis may be performed to identify an underlying cause of the anomaly. Amniocentesis tests the amniotic fluid during the second or third trimester of pregnancy and poses a 1 in 500 risk of miscarriage.
Treatment/Prognosis
Treatment for children with brain anomalies varies on the type and severity of the anomaly. For example, Craniosynostosis, one of the most common human malformations, is not a life-limiting condition and can be corrected with surgery within the first year, or in more severe cases, can be corrected by a series of surgeries throughout childhood. Surgery is a common treatment to allow the baby’s brain to grow and develop normally, but medicine is also an option to manage a child’s symptoms from some anomalies.
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.
Below are additional support resources that may be helpful.
Sources
Malloy C, Wubbenhorst MC, Lee TS. The perinatal revolution. Issues Law Med. 2019 Spring;34(1):15-41. PMID: 31179670.
Conditions We Treat | Pavilion for Women (texaschildrens.org)
Congenital Brain and Spinal Anomalies - Johns Hopkins All Children's Hospital (hopkinsallchildrens.org)
Congenital Brain Anomalies - Fetal Health Foundation
Congenital Anomalies of the Nervous System - UChicago Medicine
Diagnosis-Specific Support
A place that provides information about anencephaly, shares stories and pictures of families who have been there, gives practical advice based on their experiences, and contains links to other helpful and supportive places.
Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations. Families for HoPE seeks to provide support for all stages in the HPE journey: families of unborn infants receiving a diagnosis of HPE, families of children with a diagnosis of HPE, and families grieving the death of a child with a diagnosis of HPE
We have created this website to help and inform parents and families of children who have been diagnosed with Microcephaly, Lissencephaly, Polymicrogyria and other closely related neurological disorders.
HA's mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition. We fund high-impact research, provide support and educational resources for patients and caregivers, and advocate on behalf of the hydrocephalus community on key policies and legislation.
The National Hydrocephalus Foundation (NHF) provides knowledge, education, support, and assists in finding medical care. We’re here when you need someone to share with.
The PMG Awareness Organization is a 501(c)3 nonprofit organization of families, caregivers and medical professionals who care about those with Polymicrogyria. We are committed to bringing awareness of Polymicrogyria (PMG) and to be a guiding light for those who have lost their way after being diagnosed. Our goal is to provide a comprehensive overview of Polymicrogyria.
- Pediatric Hydrocephalus Foundation
The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus. The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus. Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.
Facebook Groups:
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.
To support families who are affected by Microcephaly in any way whether you are a parent, grandparent or carer!
Offering awareness, emotional support and care package gifts to families after learning their baby has Anencephaly. These care packages include hats specially made to fit most babies with Anencephaly as well as special keepsakes and awareness items for families currently carrying their baby - planning to carry as long as they can, or planning for compassionate induction at any gestation. There is no fee for the care packages.