Learning that your baby has been diagnosed with a lethal, life-limiting, or severely debilitating diagnosis raises challenging questions and many difficult emotions like grief, shock, disbelief, isolation, and anger. You are not only faced with the decision of how to proceed with your pregnancy, but must also confront the inevitable loss and intense grief for your child. You feel heart-broken and devastated.

It's normal...

• to question whether the diagnosis is a mistake
• to feel fluctuating feelings of denial and hope
• to feel that it's unfair
• to feel guilt or responsibility for "creating" the abnormality
• to grieve the loss of a "normal, healthy" child that you had imagined
• to feel anxious and/or depressed
• to question the decisions you made

I am here to listen and provide support, to help you sort through your thoughts, and to help you process your grief.

Additionally, we can talk about things like:

• how your faith beliefs are impacted
• memory-making ideas
• facing stigma
• dealing with tough emotions
• communicating with your spouse/partner (differing grief expressions)
• how to honor/remember your baby's life, and much more
  

Organizations & Resources:

TRISOMY 18 FOUNDATION
Helps to improve the lives of children and families impacted by T-18 by providing support and connecting families.

TRISOMY 18 JOURNEY
Addresses the issue of getting an "incompatible with life" prenatal diagnosis, deciding to carry to term, making decisions about what palliative care means for an infant, and grieving the loss of an infant. It includes Trisomy 18, grief, and carrying-to-term resources.

TRISOME 13 LIVING WITH PATAU SYNDROME
Online support group

SUPPORT ORGANIZATION FOR TRISOMY (S.O.F.T.)
SOFT has been empowering families with children diagnosed with Trisomy 18, 13 and related chromosomal disorders for over 40 years. We are a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships.

EDWARD'S SYNDROME ASSOCIATION
We are a community of parents, caregivers, and individuals affected by Edwards Syndrome who are passionate about advocating for awareness, supporting families, and providing resources. Join us in making a difference by getting involved in our mission through volunteer opportunities, advocacy efforts, and donations. Together, we can create a brighter future for individuals with Edwards Syndrome.

TRISOME 13 LIVING WITH PATAU SYNDROME
Online support group

TURNER SYNDROME FOUNDATION
There is hope for Turner syndrome. 1 in every 2,000 women and girls will be affected by TS. They are the survivors of Turner syndrome, and they require a lifetime of specialized care. Your support is essential for promising research & education programs that are changing lives today.

NATIONAL DOWN SYNDROME SOCIETY (NDDS)
NDSS empowers individuals with Down Syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.
 
VIRGINIA DOWN SYNDROME ASSOCIATION
We are a community of individuals with Down syndrome, their family members and caregivers, friends, and professionals all committed to creating a community where all individuals with Down syndrome are valued for their unique abilities and differences. Here you will find information, resources, care, and connection to a supportive and welcoming community.

MARCH OF DIMES
The primary purpose of this organization is to save the lives of babies who face premature birth, birth defects, genetic disorders, as well as other diseases that can occur in infancy. The web site offers information on a wide range of conditions, as well as timely news articles.

NATIONAL FRAGILE X FOUNDATION
This web site offers support and education to families facing this number one cause of mental retardation. Includes a special section for the "Newly Diagnosed" as well as information for physicians.

NATIONAL ORGANIZATION FOR RARE DISORDERS
This national organization is an advocate for patients with rare disorders, promoting and fund raising for research and providing information to the government and medical community.

CHILDREN'S TUMOR FOUNDATION
This web site provides information on Neurofibromatosis, as well as a wealth of other information and resources for patients and families, including local support group information, chat rooms and bulletin boards, and youth programs.

NATIONAL MARFAN FOUNDATION
This web site provides information on Marfan's Syndrome.

PRADER-WILLI SYNDROME ASSOCIATION
This national association is a resource for education and information about Prader-Willi Syndrome to both families and medical professionals.

FAMILIES FOR HoPE
Nonprofit organization offering support and education to families of infants and children diagnosed with holoprosencephaly (HPE).

A HEARTBREAKING CHOICE
Support for those parents who choose to interrupt their pregnancies due to genetic/chromosomal anomalies, or other lethal anomalies.

POTTER'S SYNDROME
Whether your a family whose baby has just been diagnosed with Potter's Syndrome (Renal Agenesis, Potter's Sequence) or a family member or friend, or even someone who already has lost a baby to Potter's Syndrome and is looking for answers, this website was made for you.

CORA'S STORY
Cora's story, her parents, family, friends, and even perfect strangers work to raise awareness of congenital heart defects (CHD).

TMFR MAMAS
TFMR Mamas offers support groups and resources to help the loss community feel supported and not alone. A Termination for Medical Reasons is when a pregnancy is ended due to the health of the unborn baby or that of the mother. Parents who have lost babies through TFMR often feel that they don't always belong in the wider baby loss communities. Parents who have had to face a TFMR, have not done so lightly and have made the best possible decision (and sometimes, the only decision) they could. They deserve to be shown compassion and love just like any other parent who loses a baby.