Choosing Thomas

Trisomy 13 Mom Diary

For parents with a prenatal diagnosis indicating a fatal birth defect, there are dozens of questions and no easy answers. If your unborn baby has received such news, I am so sorry. I have no answers for you, but hope this post and video will help your family in the difficult days ahead.

Trisomy 13

The video, posted on the Dallas Morning News website,was created with the Laux family’s permission,  after  tests revealed their baby had the DNA abnormality Trisomy 13.

The Dallas Morning News site also provides a resource page about pediatric end of life care and tips for families. I’m not endorsing the organizations listed there, but if you are researching the topic, the page is a good place to begin.

Perinatal Hospice

Another organization, Perinatal Hospice, helps families with unborn children diagnosed with terminal conditions. The people who created the website and the organization know what you are going through. Some of them have walked the path you are on now and can help you in ways I cannot. They offer compassionate support, a wealth of experience, and lists of books and other resources for grieving parents.

Again, if you or someone you know recently received a prenatal diagnosis that could be terminal, I am so sorry. May these organizations and resources help your family make a thoughtful and loving decision. If you know of other support organizations, please contact me so I can list them on the DifferentDream.com resource page.

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2 Comments

  1. September 19, 2009    

    Jolene,

    This was one of the most powerful videos I’ve ever seen. I cried through much of it. We lost our son due to multiple birth defects in 1971. He lived 8 days and never left the hospital. Times were different then. We were advised not to see our son–they said we’d “never get over it.” What I never got over was the fact that I listened to the doctors and denied our son the assurance that he was loved and safe with us.

    I applaud the work that you and people like Byron Calhoun and perinatal hospice are doing. And I’m trying to do my part, too. I’m writing a series of pro-life novels–the fourth one called Over the Rainbow (We Discovered Gold) dealing with Trisomy 13. I’m looking for a publisher at this time.

    I’m so thankful that Judy Gann put me in touch with the work you are doing. May God bless you richly. Julie

  2. September 19, 2009    

    Julie,

    So nice to hear from you, Julie. Judy Gann is a wonderful person, isn’t she?

    The loss of your son was tragic and so was your lack of contact with your baby. We can be thankful parents are given quite the opposite advice now. Your books address an important issue. Best wishes for their publication. That’s no easy task.

    Jolene

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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