Resources & Support

Trisomy 13 (Patau syndrome) is a rare genetic condition that occurs when the 13th chromosome appears three times (trisomy) instead of two times in a person's DNA. This is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body.

Occurrence: Trisomy 13 occurs in an estimated 1 out of 10,000 to 20,000 live births. The rate of occurrence is higher among children born to parents who are older than 35 years.

Common Features: Symptoms affect how the face, brain and heart develop, along with several other internal organs. Common features include heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers or toes, cleft lip/palate, and weak muscle tone.

Treatment: There is no specific treatment for trisomy 13. Treatment varies from child to child and depends on the specific symptoms. Treatment may require immediate and long-term care after birth and may include educational support, medicines to reduce symptoms, speech, behavioral and physical therapy, and surgery to repair any physical abnormalities.

Understanding the Numbers: The statistics for Trisomy 13 can be overwhelming and heartbreaking. It's important to remember that statistics tell us about populations, not individual babies. Each child is unique, and Grace-Lynn proved that miracles happen.

Median Survival: The median survival time is typically reported as 7-10 days. This means half of babies survive longer than this, and half survive less time. However, recent data shows improvements with modern medical care.

Survival Rates:

• About 34% of babies survive to 4 weeks
• About 17% survive to 1 year
• About 11% survive to 10 years
• 5-10% of babies born with Trisomy 13 survive past their first year

What This Meant for Grace-Lynn: Grace-Lynn lived 23 beautiful days—more than three times the median survival. She defied the statistics and showed us that love, faith, and miracles transcend medical predictions. Every moment was precious, every day a gift.

Remember: These numbers don't define your baby's journey. Your child's life has immeasurable value, regardless of how long they're here.

Coming Soon

We're working on compiling helpful information about medical support and care options for families facing a Trisomy 13 diagnosis. This section will include information about NICU care, palliative care options, and resources for making informed decisions about your child's care.

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About SOFT: SOFT is a voluntary, non-profit network consisting of affected families and professionals involved in the care of individuals with trisomy 18, trisomy 13, and related disorders. Established in 1979, SOFT was created to provide affected families and professionals with additional information and support when confronted with a diagnosis.

SOFT is 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.

Website: https://trisomy.org/

International Branches:

• SOFT UK: soft.org.uk
• SOFT Ireland: softireland.com

SOFT has been empowering families for over 40 years, providing connection, resources, and hope to those walking this difficult journey.

Coming Soon

We're compiling a list of books that helped us through our grief journey—books about child loss, grief, faith through suffering, and hope after loss. This section will include our personal reviews and why each book meant so much during the darkest days.

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Coming Soon

We're gathering information about grief counseling and therapy resources specifically for parents who have lost children. This will include how to find grief counselors who specialize in child loss, what to expect from grief therapy, and resources for both individual and couples counseling.

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Coming Soon

We're compiling a directory of support groups for parents who have experienced child loss, including both in-person and online groups, hospital-based programs, and faith-based support communities. Sometimes just being with others who understand makes all the difference.

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We're creating a list of online communities, forums, and social media groups where grieving parents can find connection and support. This will include communities specific to infant loss, Trisomy 13/18, and general child loss support networks.

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We're compiling the Bible verses that brought us comfort, hope, and strength through the darkest valley. This section will include our personal reflections on how these scriptures spoke to our hearts during Grace-Lynn's life and after her passing.

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We sang worship songs to Grace-Lynn in the NICU and at home—songs that became our prayers, our declarations of faith, and our way of surrounding her with love. We'll share the playlist that sustained us and why each song held special meaning during our journey.

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We're creating prayer guides and devotionals specifically for parents walking through child loss. Sometimes we don't have words to pray—this resource will help guide you through praying when your heart is too broken for words.

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We're gathering information about churches that have grief ministry programs, specifically those that minister to parents who have lost children. Faith communities that understand the sacred space of grief can be a powerful source of comfort and support.

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We're creating a guide for friends and family who want to support grieving parents but don't know what to say or do. This will include practical advice, things that helped us, things that hurt, and how to show up for someone walking through the valley of child loss.

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We're compiling resources about returning to work after losing a child—including information about bereavement leave, how to talk to your employer, coping strategies for work environments, and navigating the impossible task of "going back to normal" when nothing feels normal.

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Coming Soon

We're gathering resources for navigating pregnancy after losing a child—the unique fears, the complex emotions, the trauma responses, and how to hold both grief and hope simultaneously. This section will share our personal journey and resources that are helping us through pregnancy after Grace-Lynn.

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We're creating a collection of meaningful ways to honor and remember your child—from memorial services and butterfly releases to legacy projects and ways to keep their memory alive. Your child's life deserves to be celebrated and remembered in beautiful, intentional ways.

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We're creating resources for medical professionals on how to deliver difficult diagnoses with compassion, present balanced information that includes hope alongside statistics, and support families through the prenatal diagnosis journey. Grace-Lynn's story can help medical teams understand the parent perspective.

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Coming Soon

We're compiling resources for NICU staff caring for babies with life-limiting diagnoses and their families. This will include best practices for family-centered care, creating meaningful memories, supporting parents through decision-making, and the sacred work of end-of-life care in the NICU.

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Coming Soon

We're gathering information and resources about perinatal palliative care—a compassionate approach that supports families choosing to continue pregnancies with life-limiting diagnoses. This section will include information for both medical professionals and families about this growing field of specialized care.

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