Continuing A Pregnancy With A Life-Limiting Or Fatal Diagnosis

 

You are not alone.

There is specialized care available for you and your baby.


Guiding you through your baby’s life, birth, and death.

Expecting parents who have been given a life-limiting or fatal diagnosis find themselves in an unsettling waiting period between the time of diagnosis and the expected outcome. Many are not made aware of their options when choosing to proceed with their pregnancy and find the foreknowledge difficult to reconcile while their baby is still alive.

At RTZ HOPE, we aim to provide hope that this time can be transformed into what feels best for you and your family. As you wait with your baby and prepare for their birth and death, please know that there is not any one, perfect way to walk through this process, nor will any type of preparation feel like “enough” during such heartbreak.


PARENTING YOUR BABY IN THE WOMB

Parenting doesn’t have to start at birth. Continuing your pregnancy is a way to nurture, protect, and love your baby while they are still alive. Below are some potential ways to connect with your baby in the here and now. 

  • Eat nourishing foods for both you and your baby to allow you to feel your best physically. 

  • Engage in daily movement as an activity that you do “with” your baby. Where you go, they go!

  • Naming your baby and/or learning their gender may help you and loved ones bond before birth.  

  • Imagine yourself meeting your baby to shift your focus to their life rather than their death. 

  • Talking, singing, or reading to them is a simple way to strengthen your connection with your baby.

  • Book a maternity shoot to capture your physical body carrying your little one.

  • Be open to spontaneous, creative rituals that will help mark this significant time.

  • Take them on a special ‘bucket list’ trip or experience allows you to make lasting memories even before they are born. 

  • Include siblings and/or other important family members on important milestones such as their first kicks or hiccups. 

  • Ask for extended or regular ultrasounds to allow you to “see” your baby as much as possible.You can request digital or printed images to take home. If available, 4D or 5D imaging can provide clearer, sharper images of your little one. 

  • Recording their heartbeat as a keepsake can be an affirming reminder of their life.


PREPARING FOR THE EXPECTED OUTCOME

One of the most difficult aspects of this journey is in the unknown. Not knowing exactly how it will turn out makes preliminary decisions particularly taxing. Below are some ways to plan as much as possible with the information that is available to you now. 

  • Research your baby’s treatment options. It is appropriate to go for a second opinion no matter how certain your primary provider is about the diagnosis and what is available to you.  

  • Consider a specialized approach such as Perinatal Hospice & Palliative Care. These terms can come with the perception of “giving up” when in fact it is an active, comprehensive, holistic option to care for you and your baby. Pursuing this type of care does not preclude you from also exploring life-prolonging medical interventions. 

  • Discuss decisions on medical intervention with your birthing partner. It is normal to feel unsure or to want to wait-and-see. 

  • Meet with all members of your care team. This may include medical providers such as a clinical care coordinator, neonatalogist, social worker, and child life specialist. Depending on your plan for medical intervention, you may also want to meet with the Neonatal Intensive Care Unit (NICU) team. If your baby is expected to live longer than 4 weeks, you may also consider contacting a nearby pediatric hospital to ensure a smooth transfer for continued care – if needed.

  • Create a birth plan including wishes for after your baby’s birth. This may include preferences on fetal monitoring, routine procedures, and plans for keeping your baby with you. It may also be helpful to set up a tour of where you plan to give birth to help eliminate as many unknowns as possible. 

  • Start preliminary funeral, burial, and memorial service planning if your baby’s death is expected to occur before birth or shortly after. It may be possible to transport your baby’s body yourself. Your funeral director can assist with obtaining a license to do so. 

  • Plan to spend time with your baby after death. This may be done at the hospital or in your home. It may seem like a surprising or unusual idea at first. Allow yourself time to decide what feels right for your family. 

  • Read about the dying process to reduce fear and anxiety. Many times the unknown is what creates the sense of unease. 

  • Connect with other parents that have also chosen to continue their pregnancy. It is easy to feel alone. They are out there. If a certain group doesn’t feel like the right fit, try another. There are formal groups, online chats, and drop-in supports available to you. 

  • Seek professional counseling to help you process all that you are going through. It can be helpful to use a provider who has experience with perinatal and infant loss. 


CONSIDERING THE NON-BIRTHING PARTNER

 It can already be challenging for the non-birthing partner to bond with the baby before they are born. Knowing that their time after birth may be brief can add unwanted pressure and attention to how they interact with you and the baby during the pregnancy.

  • Find ways to include your partner in the ways you are choosing to bond with the baby but always allow them the choice to participate or not. 

  • Be patient and honest with how you are feeling. Open communication is key. 

  • Create a non-judgemental space for their feelings. Acknowledge that they are navigating a traumatic experience as well. 

  • Understand that some partners may prefer to disconnect. This is okay. Different people grieve in different ways. 

  • Include them in all medical appointments even if they cannot attend with you. This can be accomplished through having them on speaker phone, video call, or taking detailed notes throughout the visit. 

  • Understand that your partner is there and wants to help you. Lean on them for support. You don’t have to shoulder this on your own. 



NAVIGATING INTERACTIONS WITH LOVED ONES, MEDICAL PROVIDERS, AND STRANGERS 

Many people find it overwhelming to navigate sharing the news and explaining their situation. It is normal to experience a mix of reactions from others. 

  • Expect that some will be supportive, some will be hurtful, and some will be silent. This is a situation that most have never encountered and it is difficult to come to terms with. 

  • You do not owe anyone an explanation. You can choose if and what you are comfortable sharing – depending on the situation.

  • Crafting an email, blog, or social media post can be a way to share the news at a comfortable distance. 

  • Acknowledge that continuing your pregnancy can be controversial and unintentionally stir political and emotional responses from others. It is not your responsibility to mitigate their response or make them feel comfortable with your decision. This is your journey. 

  • While you can expect that many medical providers will provide compassionate care and support, others may not know what to say, or may say insensitive things. Do not be afraid to seek alternate medical providers if you feel you are not being provided compassionate and/or competent care. 

  • You may be asked by medical providers if additional staff can be present at appointments for educational purposes. You do not have to agree to this if it makes you uncomfortable. You can also choose to allow additional staff in some circumstances, but not in others.

  • Many responses will feel personal but most have little to do with you and more to do with the other person. Try to remember this when people don’t seem to understand. 


RESOURCES and support

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