By Dave Andrusko
The story of Congresswoman Jaime Herrera Beutler’s “miracle baby” was one of the feel-good stories of early 2013. Over the last few days, we’ve seen updates about the condition of Abigail Rose, Beutler and her husband, Daniel’s baby, born July 15, at only 28 weeks with what was thought to be a virtually 100% certain fatal diagnosis.
But, as we reported (“Pro-Life Congresswoman’s ‘miracle baby’ survives birth and ‘we have every expectation that she will lead a full and healthy life’”), not only did Abigail Rose survive, in spite of a diagnosis of Potter’s Syndrome, she was thriving.
Cut to The Today Show last Friday (www.today.com/news/wash-congresswoman-recalls-amazing-reality-check-her-miracle-baby-8C11089733).
For newcomers to the story, Jaime and Daniel had received devastating news when they came in for a routine ultrasound: their baby—their first—had a fatal condition for which nothing could be done.
“It is the worst moment in your life,” Jaime, a U.S. representative from Washington, told Savannah Guthrie of THE TODAY SHOW.
“He was looking at us, he was telling us ‘your baby has no options.’ It’s incompatible with life, it’s terminal. And at that moment, she was moving. She was moving in me, and he is telling me she’s not going to live,” she told Guthrie. “It was an amazing reality check.”
Abigail was thought to be beyond hope because babies with Potter’s Syndrome lack amniotic fluid, which is crucial for lung and kidney development.
But the congresswoman and her husband refused to give up hope. Doctors at Johns Hopkins Hospital offered an ingenious therapy: inject saline solution to offset the missing amniotic fluid. (“Jaime said they learned about the Johns Hopkins physician after another parent slipped her a name and said, ‘Here’s a doctor who might try,’” according to Eun Kyung Kim who wrote the story that appeared on the TODAY website.)
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What happened at birth can be read at the couple’s webpage:
“A day after the fifth infusion, Jaime went in to pre-term labor. After four days of trying to prevent pre-term delivery, Abigail prevailed and arrived. The doctors and nurses were prepared for the worst – but immediately after she was born, she drew a breath and cried! After a few minutes, it was clear that her lungs were very well developed for a baby born so early. The infusions had stopped the Potter’s Sequence. The next challenge was to address her lack of kidney function.”
Abigail remains in the care of physicians at Stanford University’s Lucile Packard Children’s Hospital. Without a kidney she is on dialysis and will need a transplant in the next year. But the family and doctors are very optimistic.
“She is doing amazing,” Jaime told the TODAY show. “In the last couple of days, we got to the point where we’re holding her. She’s playing. She will scream when her diaper is dirty. She is like any other baby. She has a few challenges, but man, she’s determined.”
The couple made it clear that parents who hear this diagnosis must not give up, even if many physicians do.
“There are no guaranteed solutions and there’s no necessarily magical cures, certainly for (Potter’s Syndrome), but don’t be satisfied with one opinion because there are a lot of intelligent doctors with different perspectives and experiences and opinions, so work to find one who will partner with you to find anything possible,” said Daniel.
“We had more doctors tell us ‘no’ than tell us ‘yes,’ and there are other parents who have had similar experiences,” Jaime said. “We’d like this to be part of the conversation when this diagnosis comes again, so these parents have an option.”