Friday, October 02, 2009

Couple prepares to say goodbye to unborn son

Elijah Friedeman, the Millennial Perspective
Date: 9/29/2009 4:05:17 PM

Lauren and Greg Tomaschko are expecting a child. But they know that their child, if he survives until he is born, will certainly die. This is a heart breaking and inspiring pro-life story. The Tomaschko’s have a blog where they write about their experience. You can read it here.

Lauren and Greg Tomaschko hope their son, Jonathan, is born before they lose him.

For now, Jonathan Tomaschko is a tiny foot in his mom’s ribs. A ricochet of mini hiccups jiggling her belly several times a day.

Each time he moves, his mom stops and concentrates on what he is doing. She doesn’t want to miss a minute of her son’s too-short life.

Jonathan is a baby who might live his entire life inside of his mom. If he does not die before he is born, he will die soon after. A few minutes. Maybe a few hours. Days would take a miracle.

“Not compatible with life” is the sterile medical phrase assigned to Jonathan’s condition. Trisomy 13 is a rare, always fatal, chromosomal defect. His heart and kidneys cannot function outside of his mom’s womb. He has an extra chromosome in every cell of his body.

“Meeting our son alive is our greatest desire in all of this,” says his mom, Lauren, adding that she and his dad, Greg, pray that they will be able to hold and comfort their son when he dies.

“It’s our chance to be parents to him and to show him how much we love him, and by making sure he’s not alone when he takes his final breaths,” she says.

She has tried to imagine what it will be like laboring with her son, hoping that he survives the delivery, cradling him in her arms.

It always makes her cry.

“I imagine memorizing every single part of his body, the way he smells, the noises he makes, and declaring him ‘beautiful’ and ‘perfect’ in spite of any physical defects Trisomy 13 has caused.”
Read the rest of this story here.

Related link:
Living with Trisomy 13 http://livingwithtrisomy13.org/
My Very Own Angel http://www.myveryownangel.org/

twitter / 40DaysHonolulu

1 comment:

Living with Trisomy 13 said...

Its wonderful that Lauren is carrying to term. However I am troubled by the quotes the article shares as a blanket statmenet that:
"Trisomy 13 is a rare, always fatal, chromosomal defect"

This is MISinformation. There are many survivors. 90+ now LIVING with trisomy 13. My child is now 9 yrs.

Only one site offers this misinformation and sadly this quote has been picked up by some families.

You can view stories of some of the survivors and many other families who have carried to term a trisomy 13 Patau Syndrome child off the Living with trisomy 13 website. http://livingwithtrisomy13.org

Mom to Natalia, who is now 9 and living with trisomy 13.