take your time
Resources
If you’re here because you just received a diagnosis: we see you.
The searching, the late nights, the rabbit holes. The what-ifs and the whys. You are not alone in this. This page exists because we’ve been there too. Take what you need. Come back when you’re ready.
On This Page
Take what you need — jump straight to it, or scroll gently through.
Understanding
What is Trisomy 18?
Trisomy 18, also known as Edwards Syndrome, is a chromosomal condition caused by the presence of an extra copy of chromosome 18.
1 in 5,000
live births
Chromosome 18
an extra copy
Many trisomy 18 pregnancies do not survive to term. For babies who are born, the condition affects development in significant ways. Every baby is different. Every journey is different.
It is often described as incompatible with life, but
families who have walked this road know that is not
the whole story.
The Road Ahead
What to Expect
There is no single path. There is only your path.
A diagnosis brings uncertainty more than answers. There will be appointments, scans, and decisions. Some of them impossibly hard, and most of them yours to make at your own pace. There is no “right” way to do this. There is only what is right for your family.
Many families find comfort in planning gently for the time they may have, however long or brief. These are a few things others have found helpful, not a checklist, just a hand to hold.
Grief That Arrives Early
Anticipatory Grief
Grief does not always wait for goodbye. It can arrive the moment the world shifts, in a waiting room, on a phone call, in the quiet of a sleepless night. Grieving what you imagined while your baby is still here is one of the hardest things a parent can carry.
You are not grieving too soon. You are not doing it wrong.
Perinatal Hospice & Palliative Care
A directory of perinatal hospice and palliative care programs for families continuing a pregnancy after a life-limiting diagnosis.
SOFT USA
The Support Organization for Trisomy — family support, research, and connection across the trisomy community.
Carrying to Term
Guidance and companionship for parents choosing to continue a pregnancy after a life-limiting diagnosis.
Information & Advocacy
Trisomy 18 Organizations
Places to learn, ask, and find others who understand.
Trisomy 18 Foundation
Education, research funding, and a welcoming community for families facing a trisomy 18 diagnosis.
SOFT Foundation
Support Organization for Trisomy — family support, research, and connection across the trisomy community.
Edwards Syndrome Foundation
Resources and awareness for Edwards Syndrome (trisomy 18), supporting families and caregivers.
Compatible With Love
Reframing “incompatible with life” — support and hope for families choosing love through a hard diagnosis.
You Don’t Walk Alone
Bereavement & Infant Loss Support
For the days after, and all the days that follow.
Now I Lay Me Down to Sleep
Free remembrance photography for families facing the loss of a baby.
SHARE
Pregnancy & infant loss support — groups, resources, and companionship in grief.
Return to Zero: HOPE
Education and healing retreats for families after pregnancy and infant loss.
The Compassionate Friends
Support for families after the death of a child, of any age, from any cause.
Hand to Hold
Support for NICU families and those navigating loss, with peer mentors who understand.
MISS Foundation
Counseling, advocacy, and community for families grieving the death of a child.
You Are Not Invisible
For Dads & Partners
Grief looks different for everyone. Partners often feel invisible in this journey, expected to be strong while carrying the same loss. Your grief is real. Your story matters too.
Sad Dads Club
A community for bereaved fathers — honest, unguarded support from dads who get it.
Glow in the Woods
A discussion forum and resource space for babylost mothers and fathers. Honest, unfiltered, and built by parents who have been there.
A Choice That Is Yours
For Mothers After Loss
After losing a baby, your body may still produce milk. What you do with that is entirely your choice, and
both paths are valid.
Some mothers choose to suppress. The physical and emotional toll is real, and the decision to stop is one of self-compassion.
Some mothers choose to donate. The Teardrops and Milkdrops program at Mothers’ Milk Bank of Austin was created specifically for bereaved mothers who wish to turn their milk into a gift for another baby in need.
There is no right way. There is only your way.
Mothers’ Milk Bank of Austin — Teardrops and Milkdrops Program
For bereaved mothers who wish to donate their breast milk — a profound act of love that transforms grief into nourishment for other babies in need.
Care for the Carrying
Mental Health Support
Tending to your own heart is not selfish. It is necessary.
Postpartum Support International
Help for perinatal mental health — including grief, anxiety, and depression after loss. Free helpline and provider directory.
Star Legacy Foundation
Free virtual support groups for pregnancy loss and infant death. Grief counselors available and educational resources for families and healthcare providers.
Holding the Moments
Memory Making & Photography
Now I Lay Me Down to Sleep
NILMDTS connects families with volunteer photographers who gently capture portraits before or at birth, at no cost.
Request a photographer before or at birth. These images become irreplaceable.
Unhurried & Held
Time With Your Baby
You don’t have to say goodbye before you’re ready.
A CuddleCot is a gentle cooling system that slows the natural changes after a baby’s death, giving families unhurried, meaningful time to hold, cuddle, and simply be with their baby. No ice. No clinical interruptions. Just time.
If your hospital has one, ask for it. If they don’t, you can request one. Every family deserves this time.
CuddleCot
Used in hospitals, hospices, and homes worldwide. Ask your care team if one is available, or visit their site to learn more about how to request one for your hospital.