• Woman with obvious stress on a couch with one hand to her forehead and the other arm wrapped around her legs.

    What Do I Do If My Prenatal Genetic Test Results Are Positive?

    Receiving positive prenatal genetic test results can be overwhelming. Understanding the implications and knowing the steps to take can help you navigate this challenging time with confidence.

Test Results & Care Options

  • When parents receive a prenatal diagnosis involving a genetic condition, it is important they understand what comes next.
  • First and foremost, parents have the right to understand their test results.  Maternal blood tests are screening tests that indicate the likelihood that your baby has a genetic condition. CVS or amnio confirm that diagnosis.
  • Because each child with a genetic condition is unique, you should also consider the significance of ultrasound findings concerning secondary diagnoses.  These will impact the care your baby needs.
  • In some cases, you may have been told that the genetic condition your baby has is lethal or incompatible with life, but 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.
  • A Parent Care Coordinator can help you identify resources and support to help you advocate for the treatment or care that best meets the needs of your family.

Where to Find Advanced Care Options

  • A Parent Care Coordinator can help you sort through the information and options that have been offered to you.
  • Some medical centers specialize in treatments for specific conditions, and seeking diagnosis specialization is important.
  • You don’t have to seek help alone- A specially trained Parent Care Coordinator can help you find the medical care system that best meets the needs of your baby and family.

FAQs

  • Is there a need for me to rush to make decisions about abortion and/or care?
    • Making important decisions while processing a traumatic event can be really difficult. If you’re struggling, it may help to talk with a Parent Care Coordinator.
  • How do I know if I have spoken with a doctor who treats children living with this genetic condition?
    • Providers who treat children living with a genetic condition may have experience performing in-utero fetal surgery and provide or refer for other diagnosis-specific care such as physical, occupational, and speech therapies, medications, and surgical interventions. A Parent Care Coordinator can help you find providers who treat children living with your child’s genetic condition.
  • Can a doctor tell by prenatal testing what level of disability my child will have?
    • With each test and visit, you may learn more about your baby. Knowing more about your baby will help you craft the best care plan for your family. If you’re not sure where to start, a Parent Care Coordinator can help.

  • Receiving positive prenatal genetic test results can be daunting, but taking proactive steps and seeking support can help you navigate this challenging time. Confirm your results with diagnostic tests, consult with a genetic counselor, and discuss your options with your healthcare provider. Remember, you are not alone, and there are many resources available to support you and your family.

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.

888-517-5588