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Grayson Lives On – Potter’s Syndrome (posted August 24, 2018)

By Kent Bressler, AAKP BOD and Ambassador

My nephew, Todd Bressler, is a kind, mellow, hardworking father of three. He and his wife Shanna found out that their fourth child, who they would name Grayson, would be born without kidneys and profoundly limited lung function. When Todd called and told me I thought immediately of Representative Jaime Hererra-Beutler, (R-WA) who received news that their child would be born without kidneys in 2013. “The doctors said, ‘It’s 100 percent fatal,’ ” Jaime, told PEOPLE magazine “She will either be stillborn, you’ll miscarry, or she will suffocate in your arms after she is born.”

This is the same news that Todd and Shanna received, but as the story goes Representative Herrera-Beutler received saline injections in her womb over the course of the pregnancy and their baby was born and began dialysis. Little Abigail eventually received a kidney from her father – what a blessing!

The absence of kidneys is called Potter’s Syndrome and is extremely rare. To date, the Beutler’s child has been the only child to survive, and there is one other mother going through the same type of therapy. My nephew’s son Grayson, on the other hand, did not receive this treatment due to his advanced fetal age at diagnosis and was born with Potters. In addition, he did not have a rectum.

That is the sad part, but here is the rest of Grayson’s loving story. Shanna chose to carry Grayson to term knowing full-well that he would not survive even with aggressive care. The medical intervention and Grayson’s care was excellent. Shanna’s willingness to carry Grayson to birth speaks for itself. She will remember this bond and it will give her continued solace.

At birth, Grayson was swaddled and given supplemental oxygen via a breathing tube. In the next ten hours of his short life he was able to share time with his three siblings and all the grandparents got to hold and cuddle him, what a blessing. He was comfortable, as was the entire family. Two sisters and a brother got to meet and hold Grayson, and that itself will provide an avenue to explain to them what happened at a later date when they’re old enough to understand better the medical issues that plagued him.

God does not always give us time to say our goodbyes. Todd and Shanna and their families got to say hello and goodbye in that short time span and for that they are grateful. Don’t think that for one moment we are not blessed to have had Grayson in our lives. He was here just long enough to fill God’s promise of love and support to everyone. He got to slip away and now has peace.

To learn more:

Watch this video from 2017on Jamie Herrera-Beutler – in the video she describes the diagnosis, and what she did to contend. Her daughter Abigail, 3 years old, is featured in the video as well:  https://www.cnn.com/2017/06/12/politics/jaime-herrera-beutler-badass-women-of-washington/index.html

Additionally, Rep. Herrera-Beutler is a supporter of kidney patients – she introduced the Living Donor Protection Act –her husband, Daniel, was a living donor to their daughter, Abigail:

Press Release from March 2017: https://herrerabeutler.house.gov/news/documentsingle.aspx?DocumentID=398852