Trisomy 13 and 18 Families Continue to SHARE their Experiences.

I came across a wonderful article from Susan Hatfield and wanted to share it as her words echo many of my own thoughts on our own Trisomy 13 Journey with Natalia. 

Families in 2012 have a wealth of trisomy medical health support options when carrying to term a trisomy 13 child. Or, if given the genetic profile at birth as we were with Natalia, there are many living trisomy support groups to help these families.

Feeding Tubes, NICU, One-on-One Care: Susan Hatfield Talks About Living with her Trisomy 18 Baby

There are many great doctors who have cared for Zane. There are many not-so-good ones as well. While Trisomy 18 is usually fatal, it is not always. And even with the shortened life expectancy of children living with the diagnosis, there should be a level of compassion on the part of the medical world when handling families such as ours.

We appreciated the neonatologist’s honesty about the statistics associated with Trisomy 18. But Zane is a living example of how the medical community is not the end-all of knowledge. They do not have crystal balls or prophetic gifts. As such, many of them should not pretend that they do. We had little or no hope for our son. With the doom and gloom presented to us, we lived in a place riddled with anxiety and hopelessness.

This is not how it should be with an extra 18th chromosome. Everyone, regardless of genetic makeup, ability, or disability, should be treated with kindness and compassion, especially when their lives are so limited. Read More

SOFT has been supporting Trisomy Families & Professionals for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

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