Kendra

Are you or your partner facing the challenging decision of pursuing Pregnancy Termination for Medical Reasons (TFMR) or continuing the pregnancy after receiving unexpected news? Whether it’s through a prenatal ultrasound, genetic test, or a medical diagnosis impacting the ability to safely carry a pregnancy, Allay Life is here to offer compassionate support and guidance during this difficult time.

Navigating the Decision
Considering the option of TFMR is a deeply personal and emotional journey, often filled with more questions than answers. Allay Life understands that the medical community primarily focuses on facts and options, offering little guidance on approaching this seemingly impossible decision. You may turn to close friends or family in this time, who may offer well-intentioned advice without understanding the complexity of your unique circumstance. Our digital workbook, developed based on 12 years of experience, provides simple exercises for navigating this decision from the privacy of your own home. Additionally, we offer 1-on-1 video appointments with a board-certified genetic counselor (trained in both genetics and counseling) to support you at any stage of this challenging journey.

Disentangling Emotions
Considering TFMR brings forth a rollercoaster of intense emotions, from guilt and sadness to anger and confusion. Emotions are a response to the parts of life that are most near and dear to our heart. A desired pregnancy represents many hopes and dreams, not only for oneself but often, for family members. Intense thoughts and feelings may be triggered by seeing another pregnant person or viewing a prenatal advertisement. Embarrassment for announcing a pregnancy or jealousy directed at others with uncomplicated pregnancies are common emotions. Allay Life acknowledges the complexity of the emotions you are experiencing. Our workbook helps you understand your emotions, fostering a sense of validation for what you are feeling during this difficult time.

Clarifying Your Values
TFMR can raise profound questions about personal values and beliefs, such as spirituality, relationship to loved ones, and views on disability/quality of life. Society, culture, friends and family can further impact personal feelings about a pregnancy and the idea of pregnancy termination. In this time of decision-making, our workbook helps you clarify the unique circumstances of your life. Learn how to listen to your inner voice and trust in your ability to make a decision aligned with your personal values, beliefs, and experiences.

Preparation, on Your Own Terms
Receiving unexpected news in pregnancy often involves unfamiliar medical information or uncertainty about a baby’s prognosis. It is normal to search online for similar stories and information. Yet, sorting through it all can feel endless and confusing. You may wonder if you must sift through it all to make this decision “correctly”. Reading other people’s stories can be comforting but may also lead to more questions or second-guessing. Keep in mind that every pregnancy is unique, even within the same diagnosis. If you find yourself overwhelmed, give yourself permission to stop searching or limit the time you spend online. When faced with information overload or conflicting information, turn back to your provider or seek a second opinion. In the setting of a prenatal diagnosis, ask your healthcare team for printed information or online resources (if not provided).

Bureaucratic forces, such as hospital and state laws/policies, may also influence access to pregnancy termination, leaving you confused and overwhelmed. Our workbook can help you organize your thoughts and feelings, while providing critical information and resources about TFMR and continuing the pregnancy, to provide you with a more manageable approach to decision-making.

You deserve care and support through any decision you make following a prenatal diagnosis. In addition to exercises that help you discern a path forward, our workbook also includes several exercises to help bolster your self-care and recognize sources of support. Allay Life remains a resource even after you decide how to move forward. Our one-on-one sessions can help you honor your family, work through the meaning of your pregnancy, and help you identify resources for healing that may feel challenging to find on your own.

Allay Life believes in the possibility of healing and peace, regardless of the path ahead. We invite you to connect with us for compassionate support during this difficult time.

With love and light,
Kendra Schaa and Hannah Davidson

Are you a carrier of a genetic condition or do you have a difference in your chromosomes? Discovering a difference in our genetic code can change the way we think about ourselves.  Have any of the following thoughts or similar thoughts crossed your mind?

“I am not who I thought I was.”

“I am damaged.” 

“I am deficient.”

“I am flawed.”

The truth is, we are ALL flawed when it comes to our genetic code. Each of us has unique genetic differences which make us who we are – this is the collective experience of being human. There is no such thing as a “normal” genetic code. Some of us know about our genetic differences, and some of us have yet to find out (and may never know during our lifetime). Yet, as a society, we do not talk about our genetic differences. This leaves people who learn that they are a carrier of a genetic condition feeling isolated and often, ashamed. 

Shame is defined as “the intensely painful feeling or experience of believing that we are flawed” (Brené Brown). Shame is a normal and automatic response when our sense of self is threatened. As adults, our sense of self includes the possibility of parenthood. Learning about a genetic difference that may be passed on can threaten this possibility. Shame serves as a defense mechanism to protect us from our own stress and anxiety when ideas about our future are jeopardized. 

People all over the world feel shame. Yet, society and culture shape the way we each think and feel about ourselves. In some cultures, societal norms tell us that people of childbearing age will marry and have a family. Furthermore, women are often seen as responsible for the outcome of a pregnancy. If infertility or pregnancy loss is experienced, or if a baby is born with a medical issue, a sense of maternal responsibility is often felt. This long-standing and often false perception that women are responsible for the outcome of a pregnancy further contributes to feelings of shame. 

As you make sense of your genetic differences, be patient with yourself. The way you thought about yourself for many years has been challenged and acceptance of your “new” self will take time. Below is a list of strategies (based on scientific research) to help you tackle feelings of shame.

• Practice self-compassion over self-judgment. This means being kind and compassionate toward yourself and the distress you feel. 
• Remember that we are all born with genetic differences – this is part of being human. You did not cause this change in your genes/chromosomes and you, personally, could not have prevented this change from occurring. 
• Acknowledge that your feelings are normal. Our sense of self as adults includes being a parent or the possibility of parenthood. Anything that threatens parenthood will cause an emotional reaction.  
• Understand that your feelings are the result of conditioning by your society and culture. There is not something “wrong” with you for having these feelings. 
• Focus on what you can control moving forward. 
  • Understand your own reproductive choices. I recommend speaking to a genetic counselor, as they have training in helping people explore these options.
  • Meaningful decisions about family planning are guided by your personal values. Explore you and/or your partner’s personal beliefs and values.  Does this genetic information impact your decision to have biological children? If you are currently pregnant, would you want to learn if your baby may have a genetic difference before birth? If so, how would you use this information?
  • Consider sharing your genetic test results with family members, including your children (when age appropriate). A family member may use the information you share for their own family planning, but without the knowledge, they cannot make informed choices.  Sharing can feel scary, especially because we cannot predict how someone else will react to information. Genetic counselors can be a helpful resource as you think through how to share this information with relatives.

  With love and light,
  Kendra

Did you or someone you care for just receive unexpected ultrasound findings or prenatal genetic test results, or experienced a pregnancy/infant loss? My heart is with you today and in the days to come. I am here to support you and offer my professional experience that has helped thousands of people cope during this time.

You can likely recall exactly where you were the day you received this news, perhaps even the time of day, along with the feelings that washed over you when you received this news. Many people feel shocked, anxious, angry, confused, grief-stricken, among countless other emotions. There is no “right way” to feel when the rug you were standing on is pulled out from underneath you. Everyone enters pregnancy with hopes and dreams for their unborn baby. Learning unexpected news can shake the core of our beliefs. Adding to this emotional rollercoaster, you may be living in uncertainty as you wait to see a specialist or schedule additional medical appointments. Uncertainty is one of the HARDEST aspects of this all. Know that there is a way forward and there are glimmers of light in the darkness you are experiencing.

My name is Kendra, and I am a board-certified genetic counselor. I specialize in helping people understand genetics and ultrasound and cope through their pregnancy journey, wherever their journey takes them.

No matter what unexpected news you’ve received, your mind may be racing ahead to countless possibilities. Quieting your mind can be an enormous challenge.  The strategies discussed below can be used immediately to help you gain a sense of control in this time of uncertainty.

• Acknowledge that your worries and fears are normal. Don’t beat yourself up for the thoughts you have.

• Be vulnerable. Don’t be afraid of your thoughts and feelings. When you notice them arising, acknowledge them. Write them down or talk to your partner or another trusted person. Ask yourself –
  • What you are most afraid will happen with your pregnancy?
  • What you are hoping will happen with your pregnancy?

Consider sharing this information with your OB provider. I have worked with many families who share fears and worries that a healthcare provider can put to rest because not all of our thoughts are based in reality or true.

• Take care of yourself physically and mentally. This looks different for every person, but may include:
  • Eating balanced meals and taking a prenatal vitamin
  • Keeping physically active; this may simply mean making time for a daily walk. Speak with your OB provider about what other activities are safe in pregnancy.
  • Seeking support; this may be from your spirituality/faith, family, friends, or even a counselor. Take time to consider who you can lean on for support in your life. Give yourself permission to ask for what you need from your friends, family, and/or partner. You might need space to share your worries with a good listener. Maybe you need prayers, or simply a hug or shoulder to cry on.
  • Journaling to express your feelings/emotions
  • Practicing meditation or mindfulness, perhaps with an app on your phone for support
  • Setting aside time for important relationships in your life, whether this be with a partner, friends, family or even a pet.

• Bond with your baby – ideas for bonding are discussed below. There are many different ways you can connect with your baby.
  • Did you have a favorite book as a child? Consider reading this book to your baby or find a book in your home.
  • Sing songs and/or play music you enjoy. Dance alone or with your partner.
  • Do you love nature? Go outside and tell your baby what you see and hear.
  • Record your baby’s heartbeat. Heartbeat recorders can be purchased through various online websites.
  • Do you enjoy crafts? Consider a craft project related to your baby – perhaps a memory book to document your pregnancy.
  • Watch a movie you enjoyed as a child with your baby
  • Talk and/or write a letter to your baby – this could include your favorite things, the meaning behind your baby’s name (if chosen), dreams for your baby, or anything else you may want to share with them
  • Create a memory box to place items of importance – this may be ultrasound pictures, pictures you take while pregnant, letters to your baby, or other items.
  • If you have other children, consider involving them in some of these activities.

You might find yourself searching the internet for similar stories. For some people, collecting information can feel empowering and may reduce some of the feelings of loss of control. Reading other people’s stories and experiences can be helpful but they can also cause stress and worry. Remember, each person’s pregnancy is unique. Your story is unique. No two pregnancy experiences are exactly the same. Give yourself permission to stop searching online if you find yourself overwhelmed.

Remember, it takes courage to show up to another ultrasound or medical appointment after receiving unexpected news during pregnancy. It’s normal to feel scared, fearful, and hopeful, all at the same time. You are not alone, even though it may feel like this at times. Lean on your support systems and prioritize caring for yourself. This is the best time to practice compassion along with your courage.

With love and light,
Kendra