You Are Not Alone: An Insider’s Guide to Facing Prenatal Diagnosis

February 2, 2015/Books

Just in time for Heart Awareness Month!!! I’m so happy to announce that You Are Not Alone: An Insider’s Guide to Facing Prenatal Diagnosis is available!!  It’s here for free in .pdf form AND available in print form on Amazon. I’m so proud of this resource! I know what it’s like to have doctors say your unborn baby is sick already – before you’ve even had a chance to hold them in your arms. I wrote this book to help parents who are facing the same dilemma.

Free resource for parents facing prenatal diagnosis

You Are Not Alone gives heartfelt information for families at each stage: prebirth, in the hospital, and coming home. It also contains tips for friends supporting a family in crisis and a section for families grieving the death of a child.

As many of you know, our son Ryan was 12 weeks in utero when doctors told my husband, Henry, and me that he would die.  His precious heart was developing outside of his chest cavity (called ectopia cordis) and was severely malformed. They predicted he wouldn’t live past 20 weeks gestational age.

We were devastated. He was our third child, on the heels of two healthy girls. No one can prepare you for the anguish and shock you feel when hearing your child is dying. There are no words anyone can say to make things better. The grief was unbearable.
At 22 weeks into the pregnancy, we consulted with a pediatric cardiologist to formulate a treatment plan. Although Ryan’s odds were very slim, we are grateful to his cardiologist who convinced a team of renowned surgeons to give him a chance.
Early on a February morning in 2009, Ryan was born via c-section at our local pediatric hospital amidst two teams of operating room personnel adding up to over 30 people. Another team consisting of critical care doctors and plastic surgeons stood waiting in an adjoining operating room to cover his exposed heart to protect him from infection – the leading cause of deaths in ectopia cordis patients.
It took the critical care team 15 minutes to stabilize him and make him comfortable on a ventilator. Beyond the unbelievable news that Ryan survived birth is the fact that his tiny heart was covered by a thin membrane divinely protecting it from outside germs.
The bad news was that doctors confirmed Ryan’s right ventricle was underdeveloped and doesn’t work (Hypoplastic Right Heart Syndrome – HRHS) in addition to several other heart defects.
This was our greatest fear. In our pre-birth consultations we were advised that the chances of survival for an ectopia cordis baby are very slim (roughly 10%), but that the chances of survival for an ectopia cordis baby with the addition of heart disease is nil. As in, there’s never been a survivor.
Ryan is the first survivor of this combination of defects!
Ryan continued to grow in the hospital where his team worked for 11 months to get him stable enough to come home. In that time, he survived multiple procedures and surgeries to get his heart re-wired enough to come home and his lungs stable enough to breathe without the assistance of a machine.
Today, Ryan is a thriving preschooler who loves Teenage Mutant Ninja Turtles and superheroes. His health didn’t come easily. We lugged around medical equipment the first year he was home and have spent countless hours with occupational, speech (for feeding) and physical therapists. But his spirit is priceless. His smile can light up the darkest day. People who meet him and know nothing of his story remark on what infectious joy he brings.
With 1 in 30 babies born with a birth defect, there are many who can benefit from this guidebook. Please help me spread the word about this resource and Heart Awareness by sharing this post to Facebook, Twitter, and Pinterest.
Leighann/1 Comment/0 Likes/Books, Living with Special Needs, Parenting, Uncategorized
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Comments (1)

  • Linda / February 2, 2015 / Reply

    You have an amazing story to tell…and I love that you are sharing it to help others Leighann!

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