If you’ve found your way here because of a recent diagnosis, I am so, so sorry you are going through this. I wanted to include an easy to find page on my blog for anyone who is reeling from this diagnosis and is unsure of what to do next. Know you are not alone, and, despite what the diagnosing doctor may have told you, there are more options out there other than termination or comfort care.
What is Potter’s Sequence/Syndrome?
Potter’s Sequence (also known as Potter’s Syndrome) is a group of characteristics, like club foot, a “squashed appearance”, low set ears, and a flattened nose, that happen because to a lack of amniotic fluid in the uterus.
A lack of amniotic fluid is caused by some kind of kidney failure in the womb. This could be a lack of kidneys (bilateral renal agenesis), kidneys covered in cysts (polycystic kidney disease), when your water breaks too early (premature rupture of membranes), a poor development of the ab muscles (prune belly syndrome), or some kind of obstruction that prevents the bladder from emptying (bladder outlet obstruction).
Because there isn’t any amniotic fluid, the baby won’t grow very big and the lungs won’t develop properly. These babies usually pass away from being unable to breathe long before their bodies build up enough toxins to be fatal.
What are my options?
When we were given our BRA diagnosis, we had two options – either end the pregnancy or transfer to comfort care. Neither one sounded like a good option but we had no idea we had any other options. That was until we were sent the story of a courageous little girl named Abigail Beutler, who is the first baby ever to survive without kidneys. We started to search like crazy for someone who would help our son the way Abigail was helped.
The treatment we were looking for is called an amnioinfusion. This is done either by a port that is placed surgically on mom’s ribs or by a large needle placed through the uterus. Both of these are done under ultrasound guidance. The lost amniotic fluid around baby is then replaced with normal saline to try and help baby develop their lungs and grow without restrictions.
Please be aware that this is still considered experimental treatment. A lot of doctors will try to discourage you from it. You should be well educated on not just the infusions but also on what your baby’s life will look like if they survive.
Judah was saved by amnioinfusions. When he was born, he was one of only 4 children living without their kidneys. I’m not sure what the number is today but I know it is higher.
Where Can I Go for Help?
That’s going to depend on your type of Potter’s. There are different clinical studies going on around the United States as well as individual doctors who will do amnioinfusions as well.
This website is a good place to start. It will show you who is recruiting for clinical trials.
There are also a couple of Facebook groups that are good places to start and full of wonderfully, supportive mamas who have been where you are.
- Amniofusion Resources
- Amnioinfusions for Moms with Kidney Babies
I also know of these hospitals and doctors that will help but it’s going to depend on what exactly is going on with baby.
- Cincinnati Children’s Fetal Care Center
- This is my number one choice. This is where Judah received the majority of his care. However, they are no longer doing amnioinfusions for babies without kidneys because of a lack of success. I think Judah may have been their only success. They will still treat for similar conditions
- I also believe they are the only ones to utilize the amnioport, which they created. This is how it is placed, if you are interested.
- This is a video done by the Fetal Health Foundation. It features doctors from Cincinnati Children’s as well as a mama that I personally counseled during her pregnancy and early treatment of her son. It gives good information about the process of treatment and what to expect.
- Cincinnati is also testing the CARPE DIEM for the FDA. This is a dialysis machine created in Italy specifically for infants. The U.S. has currently no approved hemodialysis machines for infants.
- Colorado Fetal Care Center
- A friend of ours had her baby treated here although unfortunately she went into labor too soon for them to help her baby. She said the staff was very kind and treated them very promptly.
- Stanford Healthcare
- As of 3/26/2022, they are recruiting for an amnioinfusion trial. It is being run by Yair Blumenfeld who never personally treated Judah but we did talk to him several times to consult on his care.
- Renal Anhydramnios Fetal Therapy (RAFT) Trial
- This trial is spearheaded by Johns Hopkins in Philadelphia. They are were the first ones to do amnioinfusions for BRA. They only recently started a study though.
- This is the site for every hospital officially participating the trial. It will show you a map of places in the U.S.A. that are currently participating.
- Dr. Albert Sarno in Bethlehem, PA
- Another mama said he was knowledgeable about infusions and willing to do them. If nothing else, it’s a starting place.
- Dr. Michael Barsoom in Omaha, NB
- Has saved two babies through infusions that I know of. One is 6 years old and one is 1 year old.
- Dr. Magee at Fetal Care Center Dallas
- It’s worth noting that this hospital is also attached to a level 4 NICU.
- Dr. Sina Haeri at Austin Maternal Fetal Medicine
- Dr. Janet Davis in Augusta, GA
- Dr. Padmashree Woodham in Macon, GA
- Dr. Eugene Chang in Charleston, SC
- Dr. David Dowling in San Diego, CA
- Josiah’s Journey on Instagram
- I was told another mama found this account helpful in making their choice for treatment and that it has some informative posts
This list is not exhaustive and may include some providers who are no longer willing to provide infusions.
Again, I am so sorry you are here. I am so sorry you have been given this diagnosis.
There is help and there is hope if only you are will to look.