STILLBIRTH SUPPORT

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Life-limiting fetal diagnoses are made in 2% of all pregnancies. When prenatal screening and subsequent diagnostic tests return a definitive diagnosis of a condition with a poor or lethal prognosis, such as one of the ones below, parents may face the decision of whether to continue the pregnancy. Whether you decide to terminate or carry to term, Three Little Birds is here to support your family through the following services and programs:

Click here to obtain a copy of our Palliative Care Support Package with full details on how to navigate the following time while considering all options available to you and how we can walk this journey alongside your family.

  • Bedside Memory Making - Three Little Birds can provide materials to assist or for you to make lasting memories of your special baby including foot/hand molds, Recognition of Life Certificates, blankets, and other personalized items.

  • Complimentary Maternity Photography through our Community Partner, Image is Everything Studios - Many families have found comfort in photographing their family and pregnancy as they lead up to delivery to bond and create lasting memories through our complimentary maternity photo sessions.

  • Birth Plan Preparation and Support - While families can not control what is happening, they can feel more empowered by creating a personalized birth plan to take to the hospital to provide staff with your wishes and expectations during your delivery and the time after. We can assist you in preparing a birth plan that honors your wishes.

  • Infant Remembrance Portraiture - All of our families have expressed their support of and gratitude for photography services after birth and/or during memory making. Our trained bereavement photographers will provide 20-30 gently edited photographs of your beautiful family.

  • Bump Casting Kits - Belly casting is a unique way to preserve your pregnancy bump.  We offer this service free to our families.  Once it hardens, it can then be decorated to reflect your special unique baby.   One of our trained doulas can create this bump with you or a kit can be given to you and your partner.  This is a great activity for mom and dad/non-birthing parents to share some intimacy, as well as a great bonding opportunity for your partner with the baby. 

  • 3D/4D Ultrasounds & Heartbeat Captures - Our Community Partner, Wondertime, LLC, supports our palliative care families by offering complimentary 3D/4D ultrasounds and heartbeat captures for families to share with their immediate or extended family in their office in Pitman, NJ.

  • Funeral/Memorial Service Coordination/Support - We can assist families by finding compassionate service providers in your community to provide their services for free or at minimal costs. No one ever plans for these types of expenses that can create a financial burden for families. There are also financial assistance programs for families through other non-profit organizations in the area. We also work with churches and other groups to develop meaningful memorial or funeral services.

  • Complimentary Angel Gown - Angel Gowns are created by talented seamstresses out of donated wedding gowns. Each gown is handcrafted by volunteers and given to families for burial or as a keepsake. Every baby deserves a dignified garment to wear.

  • Vast Array of Financial and Bereavement Resources - We have local and regional resources to share to help assist you with anything you need.

  • One-on-One Empathetic, Non-Judgmental Support - Our organization was founded by others who have walked similar journeys. We are trained bereavement professionals who simply want to support your needs in these unique situations. Our job is to advocate when you feel powerless. We will ensure all of your wants and desires for your child and the time you have together are met. There are no requests too large to accommodate.

Considering termination - You are likely to be offered a termination if the baby has been diagnosed with a condition that can cause death or serious disability. You may also be offered a termination if a pregnancy complication poses a threat to your life. You should not feel pressured to end your pregnancy.  Regardless of your/your baby’s diagnosis, your provider should present you with every option available so that you can make an informed choice and Three Little Birds will support you whatever decision you make. If you have decided to end your wanted pregnancy, a very special community exists to provide you with understanding, comfort, and support. While support for other types of pregnancy and infant loss such as miscarriage or neonatal death is readily available, unfortunately, those support resources are rarely a good fit for those who’ve terminated a pregnancy for medical reasons. You are not alone. Many parents have walked this difficult path ahead of you. Through the many personal stories published online and in private and/or parent-to-parent support groups, finding a community of others walking similar journeys can offer you sympathy, understanding, hope, and encouragement.

 

Three Little Birds supports your decision. We offer the same palliative care services for families whether they choose to terminate, carry to term, and even if the baby lives. We are there to support you in those delicate moments to offer space and healing, and allow you to bond and grieve in your own way. We prefer to use the term “compassionate completion” to support families and remove some of the stigma associated with this choice. For more information:

If you choose to carry 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. Perhaps you are considering continuing your pregnancy and embracing whatever time you may be able to have with your baby, even if that time is only before birth, while your baby is cradled safely inside of you. Please know that support is available (see the previous pages for our services) and that you are not alone. Parents who have traveled this path before you have found that it can be a beautiful, profoundly meaningful, and healing journey. We can peer match you with other families we have served who can support and validate your choices. For more information:

 

Understanding your baby’s condition or diagnosis is overwhelming. Doctors do not understand our need to process this life-changing news and have time for it to make sense enough to then have more questions. Below are resources and information that may be helpful to you in determining what decisions you can consider making now, options and considerations that you may have for your birth plan, as well as access to others specifically walking a similar journey.

 

Please know…Whatever you choose, we support you.  Be honest with your medical care team and do not be afraid to ask questions, follow up questions, or for clarification on anything that may not be clear or seems overwhelming to you to consider. Below are some of the more common uncertain or life-limiting conditions/diagnoses we have supported.

Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). Researchers estimate that about 1 in every 4,600 babies is born with anencephaly in the United States. There is no known cure or standard treatment for anencephaly. Almost all babies born with anencephaly will pass away shortly after birth. Many families, however, will be able to spend a few hours with their baby to bond, make memories and meet family members. Many families we have served have bought special hats for the baby to wear and include them in memory making/photography. For more information:

​Congenital Diaphragmatic Hernia (CDH) is a defect in an unborn baby's diaphragm, the muscle that divides the chest cavity and abdominal cavity. CDH occurs when the diaphragm does not close the right way during the baby's development and abdominal organs push (“herniate”) through the defect into the chest cavity. CDH is not usually inherited, and its cause is not known. CDH occurs in about one in 2,200 live births and is usually seen during a routine prenatal ultrasound in the first or second trimester. Most babies will require care in the NICU and/or removal of support. There are cases where the condition has been improved through surgery, however, there are long-term effects that can impact life expectancy. For more information:

Congenital heart defects refer to a range of defects in the structures of the heart. Congenital heart defects can affect the walls, arteries, valves, and veins of the heart, disrupting the normal flow of blood from the heart to the rest of the body. Congenital heart defects are the most common type of birth defect, with an approximate incidence rate of 1 in 100 babies. 1 in 4 babies diagnosed with a congenital heart defect has what is considered a critical congenital heart defect, which requires immediate treatment. Atrial septal defects (ASD), hypoplastic left heart syndrome (HLHS), tetralogy of Fallot, and ventricular septal defects are all examples of congenital heart defects. Not all congenital heart defects are fatal, but these defects are often associated with fatal diagnoses. For more information:

Osteogenesis imperfecta, a type of skeletal dysplasia, is a congenital connective tissue disorder characterized by fragile bones and low bone mass. There are seven distinct subtypes of osteogenesis imperfecta, ranging in severity, with only one subtype considered fatal. Osteogenesis imperfect type II, which accounts for the majority of all cases diagnosed both prenatally and postnatally, is fatal in the perinatal period. The incidence rate for osteogenesis imperfect type II is 1 in 62,000 live births. For more information:

Trisomy 13, also known as Patau syndrome and trisomy D, is the third most common fetal aneuploidy, after trisomy 21 (Down syndrome) and trisomy 18. Trisomy 13 is the condition of having three copies, rather than two, of chromosome 13. Trisomy 13 can be full, mosaic, or partial. Trisomy 13 has an approximate incidence rate of 1 in 5,000 births. Trisomy 13 often presents as a collection of abnormalities affecting multiple areas of the body, including, but not limited to, cleft lip, cleft palate, congenital heart defects like atrial septal defect (ASD) and ventricular septal defect (VSD), kidney issues, eye issues, decreased muscle tone, extra fingers and/or toes, and brain or skeleton abnormalities. Trisomy 13 has a high rate of miscarriage. Trisomy 13 is almost always fatal in the perinatal period, with nearly 80% of babies dying before one month of life. The median life expectancy for a baby born with trisomy 13 is 7 to 10 days. The babies who do survive past the first month of life have medical complications like difficulty feeding and breathing, reflux, slow growth, seizures, high blood pressure, and severe developmental delays. For more information:

Trisomy 18, also known as Edwards syndrome and trisomy E, is the second most common fetal aneuploidy, after trisomy 21 (Down syndrome). Trisomy 18 is the condition of having three copies, rather than two, of chromosome 18. Trisomy 18 can be full, partial, or mosaic. 80-85% of trisomy 18 cases are considered full, 10% of cases are considered mosaic, and 5% of cases are considered partial. The incidence rate of trisomy 18 ranges between 1 in 3,000 and 1 in 7,000 live births. The life expectancy of a baby born with trisomy 18 varies. 55% to 65% of babies born with trisomy 18 die within the first week of life; however, 5% to 10% of infants are alive at one year of age. While these infants do grow, mature, and learn, long-term survivors experience extensive hospital stays, cardiac and respiratory complications, difficulty feeding, hearing loss, and developmental delay. Female babies diagnosed with trisomy 18 are more likely to be born alive and survive longer than males. The median life expectancy for a baby boy born with trisomy 18 is 1 to 2 months, and the median life expectancy for a baby girl born with trisomy 18 is 9 to 10 months. For more information:

Potter Syndrome is a rare condition characterized by the physical characteristics of a fetus that develop when there is too little amniotic fluid in the uterus (in utero) during pregnancy. Most often, this condition is caused by the absence of both kidneys (bilateral renal agenesis). Potter syndrome can also result from other conditions including polycystic kidney disease, malformed (dysplastic) or underdeveloped (hypoplastic) kidneys, and obstructive uropathy, in which urine cannot be voided from the bladder and builds up within the kidneys. The main cause of this condition, bilateral renal agenesis, occurs in approximately 1 in 5,000 fetuses and accounts for about 20% of Potter syndrome cases. The incidence or prevalence of other causes is unknown. Overall, estimates for the incidence or prevalence of Potter syndrome range from 1 in 4,000 to 10,000 births. For more information:

Turner Syndrome, also called 45, X or monosomy X, is the most common chromosomal abnormality that exclusively affects females. Turner syndrome is the condition of missing all or part of the X chromosome in all or part of a female’s cells. Turner syndrome is estimated to affect 3% of all female babies conceived; however, only 1% of these babies survive delivery. The incidence rate of Turner syndrome is 1 in 2,500 female live births. Turner syndrome is highly fatal, with a 98% to 99% rate of miscarriage; however, the condition is not universally fatal. One percent of females diagnosed with Turner syndrome will survive pregnancy and have a normal lifespan; however, long-term survivors have varying complications ranging from vision and hearing issues, stunted growth, thyroid conditions, infertility, learning disabilities, and developmental delay.  For more information: