Treatment options for fetal genetic conditions include in-utero interventions, post-birth surgeries, and ongoing therapies. A multidisciplinary approach ensures comprehensive care. Early intervention and specialized care can significantly improve your baby’s health and quality of life.
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How Can I Find Support for Navigating Prenatal Diagnoses?
Discover the steps to take after receiving your prenatal test results, understand the importance of diagnostic tests, and explore how specially-trained care coordinators can assist you in finding the right medical experts and support systems for your journey ahead.
Understand Test Results
- Tests administered in the first trimester are typically screening tests which determine whether your baby is at an elevated risk for having certain conditions. A screening test is not sufficient to provide a diagnosis. A diagnostic DNA test is needed to confirm the presence of a condition. While no test is 100% accurate, diagnostic tests are sufficient to make medical treatment decisions.
- Imaging, such as ultrasounds, may indicate an abnormality of an organ or limb. Sometimes findings are overstated or presented as more significant than they are. The best imaging results are those done on the child after birth.
Steps to Take
- You’ve likely already taken the first step by pursuing diagnostic tests, imaging scans, and researching the condition your child has been diagnosed with.
- For your next steps, a specially-trained Parent Care Coordinator can assist you with finding appropriate medical experts.
FAQs
- If my first trimester screening test came back positive, should I get a follow-on test to confirm the result?
- A screening test should be followed by a diagnostic test.
- In some cases, parents are told that their baby has a lethal condition or is incompatible with life following early screening tests. Even if the diagnosis is confirmed, it is inaccurate to characterize prenatal diagnoses in this way. It is not possible to tell with certainty when and if babies with genetic conditions will die. Many conditions, like Trisomy 13 and Trisomy 18, are more accurately referred to as life-limiting.
- If a positive test result is from a screening test, you may be offered diagnostic tests such as an amniocentesis or Chorionic villus sampling (CVS). While more accurate, such tests also carry risks of pregnancy loss, and you have the option to decline such tests.
- What is a genetic counselor?
- A genetic counselor may offer information about your child’s genetic condition. Genetic counselors do not work with individuals living with a diagnosis. You may feel overwhelmed by new terminology, introductions to many medical providers, and the treatment options you’ve been asked to consider. Our Parent Care Coordinators can help you navigate the path ahead-contact us today.
Immediate Support for Prenatal Diagnosis
At PrenatalDiagnosis.org, we provide immediate and comprehensive support for families navigating the challenges of a prenatal diagnosis. Our services are designed to offer practical guidance, emotional support, and access to essential resources.
Parent Care Coordinators
Our Parent Care Coordinators (PCCs) provide personalized assistance, helping you understand your diagnosis and explore available options. They offer support in developing birth and newborn care plans, and remain available for up to one year following the birth.
Emotional and Psychological Support
We recognize the emotional impact of a prenatal diagnosis. Our services include access to counseling and support groups to help you manage the emotional challenges.
Educational Resources
Our website is a comprehensive resource for understanding various prenatal diagnoses, testing procedures, and treatment options. We provide up-to-date, accurate information to help you make informed decisions.
How to Get Help
If you need assistance, please reach out to us. Our team is here to provide the support and information you need.