A tiny baby born without kidneys to a United States Congresswoman is receiving treatment at Lucile Packard Children’s Hospital. The baby likely be the first to survive a diagnosis previously considered fatal.
The infant is receiving dialysis at Packard Hospital and will eventually have a kidney transplant, the hospital announced on Monday.
Abigail Rose Beutler is the daughter of Congresswoman Jaime Herrera Beutler and husband Daniel Beutler. She was born July 15 with Potter’s Syndrome, a disorder that was caused by bilateral renal agenesis, failure of both kidneys to develop during gestation. It is traditionally considered fatal.
But doctors believe that medical procedures performed while she was still in the womb will help the baby survive.
Potter’s Syndrome is associated with a deficiency in amniotic fluid often caused by a baby’s prenatal kidney failure.
For Abigail, not having kidneys resulted in a complete absence of amniotic fluid in the womb, which is critical to lung development. The condition often results in terminated pregnancy; babies born with the condition suffer from severely undeveloped lungs. They are unable to breathe once outside of the womb.
During the second trimester, a team of specialists at the Johns Hopkins Hospital in Baltimore, Md. gave the Congresswoman serial amnioinfusion, an uncommon treatment in which a saline solution is injected into the womb in the place of amniotic fluid to help development.
Abigail was delivered early at 28-weeks’ gestation at Legacy Emanuel in Portland, Ore. She is the first baby on record with bilateral renal agenesis to breathe on her own.
“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,” the Beutlers said in a statement.
“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,” they said.
After the fifth infusion, Beutler went in to early labor while at home in Washington state. Abigail was delivered four days later with fully developed lungs. Without functioning kidneys, she was still critically at risk and required immediate dialysis under intensive care.
At 16 hours old, she made her first trip from Portland to Packard Hospital. She had surgery the next day and began dialysis immediately after, hospital officials said.
“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,'” the Beutlers said.
Despite Abigail’s prematurity, small size and life-threatening disease, she is doing well, said Dr. Louis Halamek, neonatologist at Packard Hospital and professor of neonatal and developmental medicine at the Stanford School of Medicine.
“Together with our colleagues in pediatric nephrology, we are cautiously optimistic about her future,” he said.
Abigail is currently active, stable and breathing on her own. Though her doctors are uncertain what her future holds, she will require ongoing dialysis and an eventual kidney transplant, Packard Hospital officials said.
Doctors are cautiously optimistic that early treatment using serial amnioinfusion could aid other infants with bilateral renal agenesis.
“It would be premature to say bilateral renal agenesis should always be treated using serial amnioinfusion, but this suggests it can be part of the conversation when that is the diagnosis. Hopefully science will evolve to the point where we will be able to save babies with this defect. But so far this is just one isolated case whose ultimate outcome is still unknown,” said Dr. Jessica Bienstock, who led the Johns Hopkins team that performed the amnioinfusions.
The Beutlers said they are grateful to doctors and nurses in Baltimore, Vancouver, Portland and California who were not willing to accept the fatal diagnosis, “but were willing to fight for the impossible. … We are grateful to the thousands who joined us in praying for a miracle. But most of all, we are grateful to God for hearing those prayers.”
So if the poor baby didn’t make it, would they say that God hadn’t heard their prayers?
The baby looks beautiful. Typically children with this condition have “Potter facies”–i.e. flattened facial features as the face is not sufficiently buffered by amniotic fluid in utero. It seems like she’s in excellent hands.
Why are we spending precious insurance and public funds on such desperate conditions? Death is not a bad thing, but spending recklessly on the opposition to death is a very bad thing.
Craig – I am sure that your comment will be removed, just as mine was – & that this one is likely to be, as well. Are we all supposed to be thrilled for this poor child?
What infuriates me about this is the religious slant of this, while at the same time I respect their right to express their views (while mine get deleted).
How ironic that the many people responsible for the technology & medical care, research & skill involved in saving this baby don’t believe in God – but they parents are more grateful to God than to those who actually made it possible for this poor baby to live. And what about all of the other babies who didn’t make it in the past – does that mean that God favors this family over the others? Or is it that manmade technologies & skills, plus manmade insurance made it all possible & they were exceptionally lucky? These situations are becoming more & more common, as are extraordinary life-saving measure for the old & the incredibly ill. Heck, I even see it amongst health care for pets – technology offers so much help in diagnosing, fixing & even extending the lives of humans & their pets – but there’s the same thrust to do it all, no matter the cost. But some of the costs that bear examining are the ethical ones – & we are allowed to do so just as these parents are allowed to praise God. Please don’t delete this post.
I never said that everyone who worked to save this child didn’t believe in God. I said many don’t, which is true for those involved in the sciences. I also say this from personal experience of the many scientists and medical professionals in my life. Also, what you didn’t say, but many polls show, are the details about how they believe/what God they believe in. And the devil is in the details, as you know.
You can be happy that the child was born. I’m more sad for its suffering and I wonder how long of a life is in store, & how much pain.
I can’t believe the comments on what should be an uplifting article.
I am so pleased that the baby is doing well. Unless you have been in the shoes of parents who have difficulties conceiving and/or giving birth to a healthy child, who are you to understand what they have been through and are going through.
For many people, getting pregnant and having a relatively easy birth to a healthy child is just too easy. For others, the heartache of not being able to do this is one of the hardest things to go through.
Unless you have been in their shoes, your opinion is irrelevant.
The religious beliefs of the parents and medical staff have nothing to do with anyone other than themselves. If they choose to thank God, then that is their prerogative.
an uplifting article -well done !
This is another reason to be sad for this baby- the mother. Setting women back decades w/her views. http://seattletimes.com/html/localnews/2014663775_congresswoman02m.html
I think it is important to say that all human life is valuable and worth saving. I think the article is showing that medical advancement and particularly medical personnel are striving forward in their medical knowledge so that problems which some time ago had no chance to overcome, are now successfully being treated.
All medical breakthroughs start with low success expectations, but through each failure as well as each success, more knowledge and experience makes subsequent attempts more likely to succeed. Routine procedures now were once thought of as new and ground breaking and without them they would not be routine today.
Hopefully this baby’s experience will help many more families in the future.
This is an ongoing, extravagant procedure to save a baby (?) whose chances of leading a normal life and making a contribution to the world are quite limited. What is the total cost of this gee whiz procedure?
At least we know that this Congresswoman will get the best health care for her and her baby (?) which tax payers’ $$$$ can provide. And, of course, those who use Stanford for normal procedures will be donating to this questionable cause.
It is best to let some fetuses pass without being born. I question the wisdom of bringing this already marginalized life into this world.
@ Concerned Retiree-
In order to justify this, it may be categorized as “research.” Norman Shumway operated on small children with damaged hearts who were also severely mentally handicapped. I remember a hospitalized 8 year old boy with Downs Syndrome, still in diapers, unable to feed himself, who did not walk, & whose only vocabulary word was “mama”. My child was in the same room, and Shumway and his large team were in frequent attendance and were going to operate to strengthen the walls separating the heart chambers. There was no chance that this child would ever be anything but completely dependent on others for all of his care. It seemed cruel to his young parents to take such extraordinary measures at such great cost to prolong this life.
IMO injecting the mother’s uterus with saline to protect the developing fetus was a sensible, non-exorbitant procedure with high benefit. The child should be able to lead a nearly normal life if she receives a kidney transplant.
A miracle for the baby and parents that I hope will be open to all such babies, not just those belonging to VIPs. Next question: Will the health plans cover this care?
My daughter used to work in the Neonatal Intensive Care Unit at Packard. One night an infant came in with a rare genetic disease that ONLY gene therapy could help; without it, the baby had a 100% chance of dying within two to four weeks.
The parents both worked, and one of them had what they thought was a good medical plan through Blue Shield. When the hospital checked on their coverage the next morning, a representative at Blue Shield told them, “ Gene Therapy is not covered under any of our plans. Sorry”.
Of course, the mother was then hysterical, but the financial people at Packard told the parents, “ we will not let this baby die, don’t worry. One or both of you quit your jobs to get your income low enough that we can get you emergency MediCal.”
Apparently, the parents did just that, because my daughter said the baby received the gene therapy he needed. However, it is RIDICULOUS that people must give up gainful employment to get the necessary life-saving medical treatment their child need!!!
Yes, at taxpayer expense. It would also be wonderful if other, perhaps less dramatic, health needs could be offered to people who need help paying the bills.
I also question MediCal’s determinations for eligibility. One can own a home & get MediCal benefits as log as liquid assets (and cash) don’t exceed a certain amount. I know one person who receives full benefits by having multiple bank accounts, each with less than the maximum amount. The kicker is that she also set up a trust with a bank to hold another $500,000. She can have the bank issue checks from he trust account in any amount for any purpose she wishes. California taxpayers pay for her medical treatments and monthly disability checks. Fraud does exist within the system.
Where is the line between compassion and individual responsibility?
Once the parents decided on whatever grounds that the fetus would become a baby and it did, one might hope that such a blameless child would be helped as much as possible. No doubt useful knowledge will be a result as well.
But one should ask – Congress has voted itself the best medical care insurance deal on the planet. But they seldom eat what they cook for us. In Mississippi there is a county with a male life expectancy between 66 and 67 – developing country territory. In general it’s the Confederate culture area that makes US life expectancy the lowest among the Western developed countries.
Another issue is the Congressperson’s party affiliation. That party in Washington is trying to save money by shortening US life expectancy (Ryan’s plan) and exit efforts to cut maternal death rates and so on. Their philosophy is that people ideally die in net worth order. We are to have economic classes and lower income people are out of luck – in some sense proven inferior by their economic status.
Again, the best to the new person, but many would like to know if a child born to some much much lower rent couple around here would get similar treatment including a future kidney transplant if feasible. It’s also a question I’m raising, but without really knowing the answer.
Sue — bank accts. and trusts are all linked by SSN. Medical checks all family SSNs and accts.
My opinion is relevant, given my background and that I’m a voting female. I’m sad that this baby was born, that it’ll continue to suffer. I’m sad that the baby’s mom is an anti-choice politician who relies on God when it serves her to remove choice from others & on science when it serves her – to the detriment of other women. She’s detestable.
Pray for the child,parents and the doctors
I can’t wait to see this child go one to live a productive life. How many people would have aborted this child – because what if this, what if that, cost this, cost that. I was told my child might have Down syndrome get this genetic test and that one and the state will pay for it now – so they don’t pay for it later – implying you should get an abortion. My child is 100% fine, a bright, well established student and talented excelling in all he does. So glad I didn’t listen to the state.
@Mel,
Great comment!
For those of you claiming this child will not be able to lead a normal life I ask you this, how would you know? Do you have a child that was born under these circumstances? I doubt it. I have a friend who has a daughter that was born with end stage renal failure. She received a kidney transplant and other than being more prone to getting sick she is perfect. Looking at her you would never know that there was anything wrong. Now my friend is facing a similar situation as this Congresswoman. She is currently pregnant with a little boy who has no kidneys and no amniotic fluid. This procedure could save his life but because she isn’t wealthy or famous she will not get the help she needs. I think THAT is the real issue.
Yep, Melissa, you’re right re your latter comment. An anti-choice politician will grab headlines & sympathy – as well as tax-funded care for the child – while your friend suffers in misery. I am very sorry to hear she is in this terrible position.