It is very overwhelming to hear that your unborn baby is very ill or has a condition that they might not survive. There is a lot of things to consider, like is there any treatments? Is my current doctor the best one to see during my pregnancy? Does my doctor have much experience with the condition? Is this doctor respecting my choices and putting my baby's health first?
Do your research and find a doctor your comfortable with. A good place to start is looking for a support group for your child's specific condition or illness. There is many on Facebook, or resources we often can provide if you contact us. This way you can talk with other parents who have went through similar experiences and help and support you along the way.
Carrying on
Receiving a poor diagnosis is so devastating, it is a very hard concept to grasp, that a baby is being mourned while they are still living... But that's the big thing, they are still living. Although parents facing these kinds of diagnosis do not know how long they will have with their baby, know that you can fill every second of your time with baby with love, so that's all they will have ever of known. Just the warmth, the love, the comfy life with you.
After being given a Prenatal Diagnosis often parents will feel pushed towards or given the option to have an abortion, or induce labor at a time where the baby is far too under developed to survive. This is a choice that CAN NOT be changed once you've done it. No one can tell you 100% what will happen. Abortion is often a choice parents express they made because they feel it is what people expected them to do, or that they thought it will be less painful. Its not the case, either way there would be pain, but carrying on gives some comfort to parents as well. Choosing to continue to carry your pregnancy you will know you gave them the best possible chance. Staying pregnant you will not have the doubts. You will be able to have a special bond with baby and know that you filled their life will safety and love.
The situation is hard, but you are not alone. There is so many people who will help you though this if you reach out. With the resources below you can make the most out of your pregnancy and the time you have with baby, regardless of the outcome.
No matter the statistics, you will almost always find some baby, some where who has beaten the odds. Many parents who received a prenatal diagnosis regret not getting a second opinion. You have choices, always look for a doctor you trust and is supportive of your choice.
No matter the statistics, you will almost always find some baby, some where who has beaten the odds. Many parents who received a prenatal diagnosis regret not getting a second opinion. You have choices, always look for a doctor you trust and is supportive of your choice.
*Please keep reading for more information and helpful resources.
Fatal Diagnosis
When diagnosis is highly expected to be fatal, We know that carrying to term knowing baby will not survive is hard, but parents who have done it will tell you it is worth it. By continuing your pregnancy you get time and memories with your baby. Getting to hold them after they are born (living or stillborn) can be a big comfort to many.
There are many things parents do to get and keep these memories like go on a special family vacation, journal, write letters to baby, take lots of photos, Record your baby's heart beat, get 3D/4D ultrasounds, get maternity photos done, read to your baby, play music for your baby.
If you are close to delivery please look through our page "Awaiting Delivery" to help decide what to do at the hospital and what to pack.
It may be very hard, but you are not alone. Here are some options, resources, and stories of others who chose to carry on, no matter the odds.
Places that support families carrying a baby with a prenatal diagnosis
Please also see our diagnosis specific resources and Stories of babies who lived despite diagnosis. If you need help finding resources not listed feel free to contact us.
- All That Love Can Do Support for families who continue their pregnancy after fatal diagnosis.
- Sufficient Grace Ministries Provide resources and perinatal hospice support for families receiving a fatal diagnosis in pregnancy, help families form a birth plan, and support throughout the life of the baby, and support following the loss.
- Bridget's Cradles Grieving and Healing: Ideas on how to cope with grieving before, during, and after the loss of your sweet baby.
- Shane Michael Haley Inspirational story of how a couple beautifully made the most of their pregnancy after receiving a fatal diagnosis with anencephaly.
- Now I Lay Me Down To Sleep Providing free professional photos of your baby after they are born (even if stillborn)
- Purposeful Gift Increasing awareness about neonatal organ donation. So your baby's short life can help another live.
- Every Life Counts A place where parents can share their memories, their stories, their love and their pain; where their children are remembered and cherished; and where we acknowledge that every life counts.
- String Of Pearls Compassion and practical suggestions as plans to honor the life of pre-born babies are crafted. Each life has a story worthy of telling and we are here for support as stories are lovingly written, also offers Keepsakes Box with plaster kit to make hand and feet imprints
- Sustaining Grace Helps families get 3D/4D ultrasounds, so families can have more memories with baby, and be able to see them while they are living inside the womb.
- Be Not Afraid Provide peer based support to parents experiencing a prenatal diagnosis and carrying to term.
- Isaiah's Promise Support for families carrying to term after a severe or fatal prenatal diagnosis.
- Prenatal Partners For Life Support, information and encouragement for carrying to term after diagnosis, or raising or placing a child for adoption with severe special needs.
- Poor Prenatal Diagnosis Has information on a variety of conditions.
- Bereaved Parent USA
- National Organization for Rare Disorders Not Loss Specific, but does offer support for many rare disorders.
- A Child of Promise A Child of Promise was founded to support and encourage families who are continuing their pregnancies to term following a poor or fatal prognosis for their unborn child.
- Cherishing The Journey offers comfort and guidance to parents who lovingly continue their pregnancy after receiving a negative prenatal diagnosis for their baby, as well as parents who have experienced the loss of an infant. We believe that each child is a gift, and we wish to help families honor their beloved baby by providing memory items, support, and resources.
- A Baby's Legacy Every life leaves a legacy. Even the tiniest drop of rain creates ripples on a pond; likewise, the tiniest life matters and makes an impact on the lives he or she touches...a legacy remains.
- The Haven Network Labor and Delivery doula, free photography and special birth announcements, memory box, foot print impressions, and mommy and me jewelry and more support.
- Forrest Spence Fund For after baby is born... "The Forrest Spence Fund is to assist with the non-medical needs of critically or chronically ill children and their families throughout the Mid-South."
- Make a belly cast
- Read your favorite books to your baby
- Put music close to your belly and see how your baby reacts to different music
- Make a pregnancy journal (Chart belly growth, write down cravings and dreams, write in it daily)
- Get a 3d ultrasound and video
- Take lots of maternity photos
- Take a weekly belly picture
- Have a gender reveal party
- Go to family outing so baby can "experience" them with the family, and be a part of those memories