Prenatal Testing & Diagnosis

While stillbirthday is not a medical website, this is a general list of information and resources related to the journey of prenatal testing. If you have been given information that there is a possibility of your baby having a particular diagnosis, even a non-fatal one compatible with life outside of the womb, it is still important to give yourself space for the authentic reactions you are facing. These can include:

total overwhelm. The big questions of the definition of life in utero or elective abortion (TMFR – termination for medical reasons) can seem absolutely thrust upon you, and convictions or beliefs you might generally hold in regard to these questions can all seem absolutely uncertain now.
anger. Because even if you hold to particular convictions regarding the duration of life in utero, having to even be presented with this in the first person, during a season that is intended to be full of life and joy, can seem like an abandonment or betrayal or some kind of cosmic trickery, no matter your spiritual or philosophical views.
isolation. Isolation spiritually as mentioned above, but isolation socially as well. Who can you trust to share with that you are facing such an overwhelming and personal time? Please know you are not alone.
shame. Shame can storm in big and fast. You might have heard that chromosomal differences are specifically due to the mother’s egg, for example. Shame for not having an idyllic pregnancy can haunt you at a time that you’re already so perplexed by what you’re facing.
grief. The only healthy way to move forward with what you’re facing is if those who love and support you give you the space to your authentic reactions to what you are facing. You need to know, to really know, that you have permission to explore the meaning, purpose and path of your journey, surrounded by validation and support for your healing. You can learn more at our Living Grief article.

~~Please visit our next support page for pregnancy, which includes carrying to term and further information.~~

The diagnosis – or, the possibility of a diagnosis – can be a very confusing time. Different tests might be offered, and these might be looking for different things. Here are some tests that might be offered.

Screenings & Diagnostic Testing

Screening tests reveal a probability of a diagnosis simply based on markers. This does not give a conclusive answer, only a probability. Diagnostic tests look specifically for certain diagnoses and can often give a more definitive answer, although mothers can attest to false outcomes with either form of testing.

Screening

A blood serum screening looks for alpha-fetoprotein, inhibin A, plasma protein A,estriol, and human chorionic gonadotropin. This combined with the mother’s age and an ultrasound looking for specific “markers”, or, indications of a particular diagnosis, can offer some information for you.

Secondary Complications

Higher Level Ultrasounds may not discover but do try to determine possible secondary diagnoses that may be more possible given a first diagnosis. Once an initial diagnosis is established, you may be overwhelmed to discover that secondary complications may present themselves, which you may learn about prenatally or may become more prominent later in your baby’s life. These secondary medical issues may compound an already overwhelming, weary, isolating and shaming time. Please, please be gentle on yourself, and please, please, go slow. Get support around you to unpack any and everything you’re facing.

For example, in a diagnosis of Down Syndrome, you may learn that there is an increased possibility of medical conditions such as heart defects or Leukemia. As you look for answers and for support, please consider that one person’s journey with a diagnosis may include more, or more severe, medical conditions than you might be facing with your baby.

Diagnostic Testing

This can include chorionic villus sampling (CVS), amniocentesis, or the newer, MaterniT21 testing.

Here are some resources for encouragement for your journey.

From Stillbirthday

Process of Birth Planning
TMFR (termination for medical reasons)
General Listing of all prenatal, NICU & long-term parenting support

From Other Mothers & Fathers

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BIRTH & BEREAVEMENT QUOTES

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She was a genius of sadness, immersing herself in it, separating its numerous strands, appreciating its subtle nuances. She was a prism through which sadness could be divided into its infinite spectrum.

— Jonathan Safran Foer, Everything Is Illuminated

No one ever told me that grief felt so like fear.

— C.S. Lewis, A Grief Observed

I am strong.

— January, founder of Birth Without Fear

When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time—the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes—when there’s a particular missing part that overwhelms you with the feeling that she’s gone, forever—there comes another day, and another specifically missing part.

— John Irving, A Prayer for Owen Meany

They say time heals all wounds, but that presumes the source of the grief is finite.

— Cassandra Clare, Clockwork Prince

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