Beutler posted a message on Facebook in June saying her unborn child has been diagnosed with Potter’s Syndrome, a condition which prevents the child’s kidneys from developing properly and is typically fatal for the baby.
“Our baby has a serious medical condition called Potter’s Syndrome,” Herrera Beutler announced Monday on Facebook. “We have had a second opinion and the medical diagnosis was consistent with the initial news: there is no medical solution available to us. We are praying for a miracle.”
In Potter’s syndrome, the unborn baby has an atypical physical appearance as the result of oligohydramnios, a decrease in amniotic fluid volume that causes developmental problems and babies with Potter’s Syndrome typically die within a couple days of being born.
In a post on Facebook today, Beutler announced the birth of her daughter and said little Abigail Rose Beutler is doing well — two weeks later.
With great joy, gratitude and hope, we are pleased to share with you the news of the birth of our daughter, Abigail Rose Beutler, on Monday, July 15 at 3:13 AM at Emanuel Legacy hospital in Portland. She weighed two pounds, twelve ounces and was only 28 weeks along. She is every bit a miracle.
A few weeks ago, we shared the news of her diagnosis of Potter’s Sequence. In Abigail’s case, Potter’s was caused by bilateral renal agenesis. The condition caused a complete absence of amniotic fluid, critical for lung development in the womb. Multiple doctors explained that based on medical evidence her condition was incompatible with life and that, if she survived to term, she would be unable to breathe and live only moments after birth. We were also told that dialysis or transplant were not possible. The options we were offered were termination or “expectant management,” that is, waiting for her to die. Instead, we chose to pray earnestly for a miracle. Many of you joined us.
Through the outreach of a parent who had faced a similar situation, we found a group of courageous and hopeful doctors at Johns Hopkins who were willing to try a simple, but unproven treatment by amnioinfusion. Every week for five weeks, doctors injected saline into the womb to give Abigail’s lungs a chance to develop. With each infusion we watched via ultrasound as Abigail responded to the fluid by moving, swallowing and “practice breathing.” The initial lack of fluid in the womb caused pressure on her head and chest, but over the course of the treatment we were able to watch them reform to their proper size and shape. Her feet, which were clubbed in early ultrasounds, straightened. There was no way to know if this treatment would be effective or to track lung development, but with hearts full of hope, we put our trust in the Lord and continued to pray for a miracle.
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.
The first doctors we encountered told us that dialysis or transplant were not possible. No local hospital was prepared to perform the procedure necessary – peritoneal dialysis – on a baby so small. Johns Hopkins was willing, but too far to transport. After a day of searching, we found a team at Lucile Packard Children’s Hospital who were “happy to have her.” At sixteen hours old, she made her first trip to California, had surgery the next day and began dialysis immediately after. She is active, stable and breathing on her own.
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As far as every doctor we’ve spoken with knows, Abigail is the first baby with bilateral renal agenesis to breathe sustainably on her own.
Abigail is making new friends in the NICU from all walks of life receiving exceptional care. Although Abigail will need ongoing care after she comes home, we have every expectation that she will lead a full and healthy life.
We are grateful to the doctors and nurses in Baltimore, Vancouver, Portland, and California who, like us, were not willing to accept the fatal diagnosis, but were willing to fight for the impossible. We owe a special thanks to Dr. Jessica Bienstock at Johns Hopkins, Dr. Fred Coleman at Legacy Salmon Creek Hospital, Dr. Anya Bailis at Legacy Clinic Maternal Fetal Medicine, and the entire team at Lucile Packard Children’s Hospital. We are grateful to the thousands who joined us in praying for a miracle. But most of all, we are grateful to God for answering those prayers.
As for mom, she is doing well, caring for her precious little daughter and recovering.
We feel called to share with you the details of this wonderful story of God’s work and the remarkable doctors who helped us in the near future. At the moment, our focus is, of course, on our beautiful fourteen day old daughter.