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