Prenatal diagnoses and issues of so-called “medical futility” are difficult. Read about the topic and the real life situations below. If you are looking for Louisiana law on the topic, visit our www.PostRoeFacts.com page.
Hear from mothers. Understand the options.
Prenatal diagnoses and issues of so-called “medical futility” are difficult. Read about the topic and the real life situations below. If you are looking for Louisiana law on the topic, visit our www.PostRoeFacts.com page.
Have you or someone you know received an “incompatible with life” or “medical futility” prenatal diagnosis?
You are not alone. The news of a prenatal diagnosis can be crushing. You may not know what to do or where to turn. You may anguish over what medical decisions would be best for your baby and wonder how to approach the rest of the pregnancy. Please do not let yourself be pressured by your doctor or others to make a choice that you may not believe in, and please consider all of your options and the community support available. There are resources that are dedicated to walking alongside you in pregnancy and in helping you after birth and throughout your child’s development, however brief or long your child’s life is. There are also resources for counseling and information you may need to prepare for late miscarriage, still birth, and burial.
Delainey was born with a cleft lip and palate, her left eye was small and underdeveloped. She had many heart abnormalities such as a large ASD and VSD and her left sorts tapered off and was severely deformed. Her kidneys were functioning at about 30% after birth and were quite cystic. She never required any help at birth with breathing which is rare. She was born early at 33 weeks and she fought hard to prove our world wrong… Read Delainey’s story.
Is abortion a “compassionate solution”?
We recognize the deep suffering families experience after receiving grave diagnoses. With this being said, we should never intentionally kill people with disabilities or terminal illness, regardless if they are born or waiting to be born. We believe the best way forward that supports the mother and respects the life of the living baby is to provide support for families and perinatal palliative care from the moment of the diagnosis through the duration of the child’s natural life. Our position is backed up by the many families who have chosen this option.
Regardless of what is claimed, abortion is not a simple, non-violent way to prevent someone from experiencing suffering. The reality of abortion is that of a brutal procedure in which a human is torn into pieces or poisoned to cause cardiac arrest in order to have a stillbirth; even in cases where adult humans would be unable to experience pain, we would consider it barbaric to dismember or poison them. This is the position we would hold for any other human being at any other point in life: we would never intentionally kill cancer patients, a grandmother in the nursing home, the two year old with Down syndrome, or the five year old with leukemia.
“We knew after all of the knowledge we had gained from Emma’s life and death that no matter what, this baby was going to be with us longer. We got the phone call the day after Thanksgiving that something was wrong. My blood test wasn’t good, and we had to come in the next week. I think that gave me time to prepare myself some, and our worst fears for our baby were confirmed on December 2; he had Anencephaly. We also had the most wonderful news on that day too, it was a boy…” Read Emma and Connor’s story.
What resources are available?
Below, you will find communities filled with: families who have endured a similar prenatal diagnosis, organizations who give advice and financially assist with the pregnancy, bereavement, and burial process; foundations formed by families that have had children with Trisomy 13, 18, and others who survived birth and are thriving; and Louisiana disability and special needs resources that are available to your child. Please feel free to reach out to Louisiana Right to Life for further direction and local family connections.
Prenatal Partners for Life: We are a group of concerned parents, medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents with a special needs child. Visit PrenatalPartnersforLife.org
Be Not Afraid: Recognizing the often difficult and unique situations faced by parents, we provide individualized support and care. We provide bereavement support, practical guidance, information, and referrals so that parents understand what is normal, what is possible, and what might be helpful as they carry to term. Our service is comprehensive, personalized, and delivered by case management support staff and peer volunteers. We work with parents in the development of a written birth plan, which includes a newborn care plan, so that they understand the decisions they may make regarding labor, birth, and the care of their baby. We attend births when requested or assist parents in finding appropriate birth support. We share information on funeral planning, memory-making, and can help with the cost of a funeral if needed. For parents after birth, we offer on-going contacts for one year, private Facebook communities, and referrals for support as needed. Visit BeNotAfraid.net
Carrying to Term: When you’re facing a prenatal diagnosis of a life-limiting condition, the decision to carry a pregnancy to term is often accompanied by a range of questions and emotions. We are a non-profit organization dedicated to helping you gather the support, tools, and resources necessary to navigate the months ahead. Visit CarryingToTerm.net
Alexandra’s House: At Alexandra’s House you have at your near-immediate disposal a large, compassionate, ever-growing community of your peers. It consists of parents, couples, grandparents, aunts, uncles, friends, and more, ready to welcome you with open arms and understanding hearts. We each have been skillfully trained to serve you by our own personal losses of our babies from any cause, both expected and unexpected ones. Because we’ve been there, we can truly say ‘I/we understand’. While Alexandra’s House is located in the heart of America, it has served people around the world. Visit AlexandrasHouse.com
Trisomy Support From Families to Families: Once diagnosed with a TRISOMY child, the journey began. Whether their child was diagnosed prenatal, at birth, or even years later, visited a short while, or presently brightens their day, here you’ll find Families, Sharing – Growing in Love, while Living with Trisomy. Most of the linked family web pages will have Trisomy support organization links of their own, but this site is specifically for families to connect with other families through their own web pages.Check the individual sites for contact information. Visit LivingWithTrisomy.org
Visit our webpage about Down Syndrome for family stories, community, and Louisiana resources: https://prolifegala-com.prolifelouisiana.org/downsyndrome
Visit this website about Anencephaly with resources, encouragement, and advice: https://www.anencephaly.info/e/index.php
Perinatal Hospice and Palliative Care: Even without a formal program, you can still take a perinatal hospice approach with your pregnancy. You will need to make decisions and advocate for your needs and the needs of your baby, which can be challenging when you are overwhelmed with sadness. You might need to educate yourself and your health care team about perinatal hospice. Ideally they will be supportive and willing to learn; sometimes it’s necessary to change providers to find someone who is more open to helping you. Even if you have to take the lead, you can be energized by knowing that you are parenting your baby in ways that will honor this child as well as your role as parents. See the resources for parents for many resources about birth planning and ways to celebrate your baby. (For one family’s story of traveling this path without a formal program, see Waiting with Gabriel.) Perinatal hospice is not a place. It is a model of care and an extra layer of support. Although having an established perinatal palliative care team is ideal, even without one it’s possible to create a perinatal hospice experience for you and your baby. A Gift of Time is a gentle and practical guide for parents who are (or are considering) continuing their pregnancy knowing that their baby’s life will be brief. Visit this Facebook page for more support, and visit PerinatalHospice.org for more information.
Woman’s Hospital of Baton Rouge: Birth is supposed to be an exciting and joyous event. Families expecting a newborn with life-limiting conditions or experiencing an unplanned outcome at birth can count on Woman’s for support. Perinatal palliative care can begin at the moment of diagnosis and may continue through delivery and beyond. This special care includes symptom relief and pain management for the infant and individual care based on your wishes, spiritual and cultural beliefs.
Palliative care may be the main focus or combined with cure-oriented care. Click here for more information.
Clarity Hospice of Baton Rouge Sunshine Program: A children’s hospice is not somewhere children go to die. It is far more complex than that. It is an unfortunate fact that some children are born with life-limiting conditions, or develop one in the early years. The doctors tell a family that their child is not expected to survive; however, predicting how long they will be with family is very difficult. Children who are not expected to reach adulthood are appropriate for admission into the Sunshine Palliative and Hospice. Click here.
Children’s Hospital New Orleans: The Pelican Krewe care for the body, mind, and spirit of children and families living with serious illness. Our team provides palliative care and integrative therapies to patients of any age at any stage of serious illness. We support the treatment for underlying illnesses while striving for the best possible quality of life. We hope to understand what is most important to your family with the goal of making every day the very best day possible. Click here.
How can I start a perinatal hospice & palliative care program? (all advice from PerinatalHospice.org)
Many programs have started with the inspiration of one person — perhaps a caregiver who has seen firsthand the need for this kind of support, or perhaps a parent who lived the experience and wants to ensure that other parents don’t walk this path alone. Most programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent. See the list of programs on this site; many have websites or brochures that may be helpful. See also the Resources for caregivers page for many professional resources and journal articles. One professional how-to resource is the Perinatal Palliative Care Program Toolkit from Gundersen Health System’s Resolve Through Sharing/Bereavement Services, which also includes perinatal palliative care in its perinatal death bereavement training.
Newly published books packed with information for medical professionals are the Handbook of Perinatal and Neonatal Palliative Care (Springer, 2020), Perinatal Palliative Care: A Clinical Guide (Springer, 2020), and Neonatal Palliative Care for Nurses (Springer, 2020). Other professional resources include “Building an interprofessional perinatal palliative care team,” published in NeoReviews, and the Perinatal Palliative Care and End-of-Life Web-Based Toolkit from the Texas Pediatric Society Committee on Fetus and Newborn. See also the framework for perinatal palliative care published by the British Association of Perinatal Medicine and its accompanying report. Online education related to perinatal hospice and palliative care is available from the National Hospice and Palliative Care Organization, Gundersen Health System, the End-of-Life Nursing Education Consortium, and perinatal loss certification from the Hospice and Palliative Nurses Association.
Some institutions have found it helpful to introduce the idea — or announce a new program — with a grand rounds or conference keynote. (Visit here for a list of Amy Kuebelbeck’s presentations.) If you are a caregiver interested in networking and sharing information, you also are welcome to join the private perinatal hospice e-mail list. Feel free also to follow perinatal hospice and palliative care news on Facebook and Twitter.
Mommies Enduring Neonatal Death: M.E.N.D. is a Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death. We publish free bi-monthly magazines, hold commemorative ceremonies, and host a variety of support groups throughout the nation. M.E.N.D. is a place for families to connect, share their unique story of loss, and learn to live life without your precious baby. Together we are breaking down the barriers associated with the isolation and sadness of pregnancy and infant loss as we strive to turn our children’s lives into legacies. Visit Mend.org.
Also visit their resource page for further national resources: https://www.mend.org/infant-loss-organizations
Maddie’s Footprints: Maddie’s Footprints was established in January 2010 in memory of Madeline Noelle McGrew. The vision of Maddie’s Footprints is to help families who have experienced miscarriages, stillbirths or the loss of an infant. We help lead these families in the right direction when they are in need of information and/or counseling. We also offer these families financial assistance for end-of-life expenses and/or medical expenses that can be overwhelming during their difficult time. Visit MaddiesFootprints.org
All God’s Babies: “The Monday Night Disciples,” decided to take on the task to build caskets that are free of charge for all families in need, and, for babies who have been abandoned. Caskets sizes range to accommodate babies from a few weeks’ old up to two years old. Visit MondayNightDisciples.org
Red Bird Ministries: An organization that systematically guides individuals and couples through the complexity and trauma that happens with the loss of a child from pregnancy through adulthood. Visit RedBird.love
The Haven Network: The Haven Network, Our immediate goal is to facilitate bonding between parents and baby and help create memories through hands on baby care. This includes providing parents as many opportunities as possible to parent their baby: bathing, dressing, making hand and foot prints along with photography are just a few of those opportunities. This initial contact with family is the foundation for building a long term relationship with them to help The Haven Network provide the best care for the family once they leave the hospital.Visit https://www.thehavennetwork.org/i-dont-have-a-haven/
A Memory Grows: A Memory Grows is a 501(c)(3) charitable organization that serves as an outreach to grieving parents, and as a resource to hospitals, clinics, hospice groups, churches and other nonprofit organizations. Our mission is to provide a space of healing and peace for parents who are grieving the death of their child. By bringing together those who have experienced a similar loss in a retreat setting we honor and celebrate our children while making connections with others who truly understand our journey. A memory grows where love carries on. Visit AMemoryGrows.org
Angel Names Association: More than 26,000 babies are stillborn in the United States every year. The Angel Names Association is a nonprofit organization that aims to ease the financial burden imposed by stillbirth, provide supportive programs and services for families enduring the trauma of stillbirth, and raise money for stillbirth research. We are here to remind bereaved parents that they are never alone on their journeys to honor and grieve their children. Visit AngelNames.org
Avery and Aubrey’s Way: Avery and Aubrey’s Way was created to assist families experiencing financial hardship that occurred after the neonatal death of a newborn infant, as well as provide emotional and spiritual support during their time of loss. Time, unfortunately, does not stop for us to grieve or even process what has happened. At Avery and Aubrey’s Way, we want to help provide families with a peace of mind that bills, some if not all, will be covered, as well as offer loved ones emotional and spiritual support. Visit AveryAndAubreysWay.org
Korie and Kacie Foundation: No parent should have to worry about medical bills and funeral expenses after a child has passed away. The following are some ways we hope to help other families through this tragic event:
The Love Loss Project: I created the Love & Loss Project to help fill the gaps I encountered during my own experience of grief and loss. I’m April Boyd, MSW, psychotherapist & mother to Nora, a little girl whom I knew only briefly but who forever changed my life.
Here’s what you can find here at LoveLossProject.com
“We were told not to expect her to be able to survive until full term, not to expect her to survive a natural delivery, not to expect her to look at us, and not to expect her to cry. On Friday May 17th, Addison entered the world at 6:59 am, she was 3 lbs. 9 ounces and 17 inches long. She was able to cry and even looked up at both of her parents…” Read Addison’s story.
Every Life Deserves a Lifetime.
