Olson Potter's Sequence Journey
Donation protected
We’re pregnant. Again. We found out in January, just before Tobey’s first birthday. Although I initially felt a sense of shock, completely overwhelmed and unprepared, after the morning sickness and chronic fatigue wore off, those feelings were soon replaced by excitement and an overall feeling of strength and invincibility. I can do this; I can do anything. I started researching baby carriers that were better than the ones I currently have (ones that would actually give me some lumbar support), compact double strollers, and car seat upgrades for Tobey, since we would be needing out current car seat for the new baby. I also toured hospitals and found a midwife group that would actually deliver VBAC. I was so prepared- way more ahead of the game than I had been the first timearound. What I wasn’t prepared for, however, was the news we would receive at the 20-week ultrasound appointment on May 1. The baby never developed kidneys, a rare, fatal condition known as Potter’s Sequence that occurs in 1 of every 10,000 pregnancies. My parent’s have always joked that if there were a hair in the soup, I would be the one to get it. I was staring at the proverbial hair.
For those of you who aren’t familiar with pregnancy or human anatomy in general, let me briefly explain why this condition is so fatal. The uterus is an enclosed pocket, a safe-zone for the baby. The only way to get nutrients and fluid in to the baby is through the umbilical cord. The baby’s kidney’s extract the fluid from the blood and excrete it through the urinary tract, creating the amniotic fluid that surrounds and protects the baby. This fluid is also essential for lung development. Without amniotic fluid, the baby cannot practice “breathing,” so the lungs will remain deflated and lack exercise. No kidneys, no amniotic fluid- regardless of how much homemade beef-hoof/chicken-foot bone broth or Knox gelatin I consume (I was very lovingly sent an article about how to increase amniotic fluid). Under normal circumstances, maybe that would work. But these aren’t normal circumstances.
The doctor briefly told us what he was suspecting and had us reschedule an ultrasound for the following week. Having been given next to no information, I naturally turned to the internet for guidance. Google confirmed the seriousness of the situation, but also offered some hope. While this is generally a fatal condition, there have been some successes with a procedure called Amnioinfusion, where a saline solution is injected into the uterus at regular intervals to give the baby a chance at developing its lungs. If successful (And, yes, I am well aware that this is a huge “if”), and the baby is able to breath upon delivery, dialysis can be done until the baby is old enough to receive an adult kidney.
After our follow-up ultrasound at week 21, the diagnosis was confirmed, and we were given two choices.
1. We could terminate the pregnancy
2. We could continue with the pregnancy, give birth to the baby, and watch it suffocate immediately after delivery
Basically we were given the choice of choosing how and when the baby would die. What a choice. I asked about the injections and was immediately shot down. I was told it was a “last-ditch, heroic effort that wouldn’t work.” Being the stubborn fighter that I am, I decided internally that this doctor was stupid and that I would find another. We immediately made anappointment with Seattle Children’s hospital for a second opinion. While the doctor’s at this hospital were more open to the idea of Amnioinfusion, it wasn’t a procedure they were able or licensed to perform. There are very few hospitals that do this procedure and, as I soon found out, even fewer that would be willing to do this procedure with this particular diagnosis.
I’ve always been the fighter in our relationship, the one to take action. Although Jeff has many, many talents, the ability to fight the system is not one of them. It’s not that he’s not willing; He just doesn’t know where to begin. In the past, I’ve always been the one to do the research and question doctors and dispute (and win the battle) against hidden fees, etc. Last night as Jeff was telling me he wanted to help, but was sure he wouldn’t be able to come up with something I hadn’t already tried, I told him I felt that the system had broken me. I’d lost my ability to fight. He went silent, looked down at his hands, and said, “I noticed.”
“When did you notice?”
“Tuesday.”
Tuesday was the day I had actually found a hospital that would do the procedure. I spent an hour on the phone with them, being transferred back and forth. I went through the entire registration process, and was then transferred to another person to set up the appointment. This person had a doctor sitting next to her, feeding her with the information she relayed to me. When I told her why I wanted the procedure, she told me the procedure wasn’t done for Potter’s Sequence. When I asked under what circumstance they would you do the procedure, I was told they normally perform the procedure for people with Diabetes who have low amniotic fluid, but not for people with zero fluid. After an hour of hope, the conversation was over. They wouldn’t help me. Nobody was going to help me.
These suspicions were confirmed shortly afterward when another hospital returned my call.
“Amnioinfusionis not an acceptable treatment for Potter’s Sequence.”
“I realize that. I’m not trying to treat the Potter’s Sequence. We’ve found a nephrologist willing to help us if we can get to the point of the baby surviving past birth. What I’m trying to do is treat the symptoms of Potter’s Sequence- the low amniotic fluid- so that the baby has a chance, even if it’s a slim chance, of surviving up to that point.”
“Amnioinfusion is not an acceptable treatment. It won’t work.”
Of course it’s not an acceptable treatment. You know what is? Termination.
Jeff to the rescue!! Although, as I've already mentioned, Jeff is not a fighter, he is a fantastic networker.
Jeff reached out to one of our state representatives, Jaime Herrera Beutler, who was the very first to have her baby survive this same diagnosis in 2013 by having the treatments done. Since then, she has been in contact with four other families who have undergone the sameprocedure. 3 of the 4 have had successful births (although two of the three died due to other reasons- I’m still counting them as successful). She has been very helpful, and provided us with the names of three hospitals that are currently performing the procedure: one in Baltimore, one in Denver, and one in Los Angeles. We contacted all three and flew out to Denver the following day. The exciting thing is that Denver actually does a different procedure than the other places. Instead of injecting each time, they actually surgically insert a tube that they can inject into for each treatment. This means that I won’t have to get stabbed in the uterus twice a week for the next four months!
We did 3 tests to determine the overall health of the baby, and everything looks good. They then took us in for a big team meeting with about 10 doctors from varying specialties to make sure we knew exactly what we would be getting ourselves into if the treatment were successful. It seems like a rough road, but we are up for the challenge.
We feel very supported by the team here and don't feel like they are trying to talk us out of anything, just trying to make sure we are aware that there are a lot of "ifs" and, despite this procedure working in some cases, there are still a lot of unknowns.
While it was slightly overwhelming for Jeff and me to hear all of the information regarding treatment following a successful birth, I think it was good as well. Despite our many differences, we both like to go into things knowing as much as possible, even if we know it won't change our decision. Besides really wanting to care for this baby and give her a chance at life, we both have the underlying belief that God will do what's best. If He feel this journey is too much for either of us or for the baby and wants this baby to come home, he'll take her back. No doubt we would be devastated, but we would get through it. But until that happens, who are we to give up at the first sign of complication?
With this being an experimental treatment, we aren't sure how much will be covered by insurance and how much will need to be paid out of pocket. We are going in to this with the hope and knowledge that the the medical field is always learning and evolving. Who knows what medical breakthroughs will happen within the next 10 years or so? Even if nothing comes of these treatments, our hope is that the doctors here can learn from this experience. And because we are choosing to move forward with this, our hope is that some day Potter's Sequence will no longer be a fatal diagnosis. And, although this isn't my motivation at all, and despite all of the emotions I've been through in the past couple of weeks, I have to admit that it's kind of exciting to be a part of that journey.
For those of you who aren’t familiar with pregnancy or human anatomy in general, let me briefly explain why this condition is so fatal. The uterus is an enclosed pocket, a safe-zone for the baby. The only way to get nutrients and fluid in to the baby is through the umbilical cord. The baby’s kidney’s extract the fluid from the blood and excrete it through the urinary tract, creating the amniotic fluid that surrounds and protects the baby. This fluid is also essential for lung development. Without amniotic fluid, the baby cannot practice “breathing,” so the lungs will remain deflated and lack exercise. No kidneys, no amniotic fluid- regardless of how much homemade beef-hoof/chicken-foot bone broth or Knox gelatin I consume (I was very lovingly sent an article about how to increase amniotic fluid). Under normal circumstances, maybe that would work. But these aren’t normal circumstances.
The doctor briefly told us what he was suspecting and had us reschedule an ultrasound for the following week. Having been given next to no information, I naturally turned to the internet for guidance. Google confirmed the seriousness of the situation, but also offered some hope. While this is generally a fatal condition, there have been some successes with a procedure called Amnioinfusion, where a saline solution is injected into the uterus at regular intervals to give the baby a chance at developing its lungs. If successful (And, yes, I am well aware that this is a huge “if”), and the baby is able to breath upon delivery, dialysis can be done until the baby is old enough to receive an adult kidney.
After our follow-up ultrasound at week 21, the diagnosis was confirmed, and we were given two choices.
1. We could terminate the pregnancy
2. We could continue with the pregnancy, give birth to the baby, and watch it suffocate immediately after delivery
Basically we were given the choice of choosing how and when the baby would die. What a choice. I asked about the injections and was immediately shot down. I was told it was a “last-ditch, heroic effort that wouldn’t work.” Being the stubborn fighter that I am, I decided internally that this doctor was stupid and that I would find another. We immediately made anappointment with Seattle Children’s hospital for a second opinion. While the doctor’s at this hospital were more open to the idea of Amnioinfusion, it wasn’t a procedure they were able or licensed to perform. There are very few hospitals that do this procedure and, as I soon found out, even fewer that would be willing to do this procedure with this particular diagnosis.
I’ve always been the fighter in our relationship, the one to take action. Although Jeff has many, many talents, the ability to fight the system is not one of them. It’s not that he’s not willing; He just doesn’t know where to begin. In the past, I’ve always been the one to do the research and question doctors and dispute (and win the battle) against hidden fees, etc. Last night as Jeff was telling me he wanted to help, but was sure he wouldn’t be able to come up with something I hadn’t already tried, I told him I felt that the system had broken me. I’d lost my ability to fight. He went silent, looked down at his hands, and said, “I noticed.”
“When did you notice?”
“Tuesday.”
Tuesday was the day I had actually found a hospital that would do the procedure. I spent an hour on the phone with them, being transferred back and forth. I went through the entire registration process, and was then transferred to another person to set up the appointment. This person had a doctor sitting next to her, feeding her with the information she relayed to me. When I told her why I wanted the procedure, she told me the procedure wasn’t done for Potter’s Sequence. When I asked under what circumstance they would you do the procedure, I was told they normally perform the procedure for people with Diabetes who have low amniotic fluid, but not for people with zero fluid. After an hour of hope, the conversation was over. They wouldn’t help me. Nobody was going to help me.
These suspicions were confirmed shortly afterward when another hospital returned my call.
“Amnioinfusionis not an acceptable treatment for Potter’s Sequence.”
“I realize that. I’m not trying to treat the Potter’s Sequence. We’ve found a nephrologist willing to help us if we can get to the point of the baby surviving past birth. What I’m trying to do is treat the symptoms of Potter’s Sequence- the low amniotic fluid- so that the baby has a chance, even if it’s a slim chance, of surviving up to that point.”
“Amnioinfusion is not an acceptable treatment. It won’t work.”
Of course it’s not an acceptable treatment. You know what is? Termination.
Jeff to the rescue!! Although, as I've already mentioned, Jeff is not a fighter, he is a fantastic networker.
Jeff reached out to one of our state representatives, Jaime Herrera Beutler, who was the very first to have her baby survive this same diagnosis in 2013 by having the treatments done. Since then, she has been in contact with four other families who have undergone the sameprocedure. 3 of the 4 have had successful births (although two of the three died due to other reasons- I’m still counting them as successful). She has been very helpful, and provided us with the names of three hospitals that are currently performing the procedure: one in Baltimore, one in Denver, and one in Los Angeles. We contacted all three and flew out to Denver the following day. The exciting thing is that Denver actually does a different procedure than the other places. Instead of injecting each time, they actually surgically insert a tube that they can inject into for each treatment. This means that I won’t have to get stabbed in the uterus twice a week for the next four months!
We did 3 tests to determine the overall health of the baby, and everything looks good. They then took us in for a big team meeting with about 10 doctors from varying specialties to make sure we knew exactly what we would be getting ourselves into if the treatment were successful. It seems like a rough road, but we are up for the challenge.
We feel very supported by the team here and don't feel like they are trying to talk us out of anything, just trying to make sure we are aware that there are a lot of "ifs" and, despite this procedure working in some cases, there are still a lot of unknowns.
While it was slightly overwhelming for Jeff and me to hear all of the information regarding treatment following a successful birth, I think it was good as well. Despite our many differences, we both like to go into things knowing as much as possible, even if we know it won't change our decision. Besides really wanting to care for this baby and give her a chance at life, we both have the underlying belief that God will do what's best. If He feel this journey is too much for either of us or for the baby and wants this baby to come home, he'll take her back. No doubt we would be devastated, but we would get through it. But until that happens, who are we to give up at the first sign of complication?
With this being an experimental treatment, we aren't sure how much will be covered by insurance and how much will need to be paid out of pocket. We are going in to this with the hope and knowledge that the the medical field is always learning and evolving. Who knows what medical breakthroughs will happen within the next 10 years or so? Even if nothing comes of these treatments, our hope is that the doctors here can learn from this experience. And because we are choosing to move forward with this, our hope is that some day Potter's Sequence will no longer be a fatal diagnosis. And, although this isn't my motivation at all, and despite all of the emotions I've been through in the past couple of weeks, I have to admit that it's kind of exciting to be a part of that journey.
Organizer
Kimberly Christensen Olson
Organizer
Snohomish, WA