This is my nephew's story. He had Potter's Syndrome. Noah touched down and lifted off sooner than any of us wanted. And I am so amazed to see how this family has pulled every good thing from that painful experience.
We were expecting our first baby and we were very excitedly awaiting the upcoming anatomy scan so we could get another peek at our baby and give them an identity. The appointment finally came. We sat anxiously in the waiting room. Finally, it was time to go to the back. I had invited my cousin to come along and witness the appointment with us. I got all set up, pulled my shirt up and the jelly was squirted onto my belly. We were finally seeing our baby.
We asked questions as the technician took pictures. “what’s that?”, “Is that a leg?” I recalled that a friend who went to the same office for her pregnancy had gotten 3D pictures at the anatomy scan. “Will we get some 3D pictures of our baby?” Silence. And then, “Normally we do that, but there’s not very much fluid so we won’t be able to.” Collin and I exchanged nervous glances and squeezed each other’s hands. I decided to be positive and not let what the technician said worry me.
Then she attempted to get the gender. That took our focus off of what had been said. Our baby was not cooperating. So the technician told us that she believed it was 70% chance a boy. Then she said that the doctor needed to come in and talk with us. Again, Collin and I exchanged nervous glances and squeezed hands.
Our doctor came in and said that after reviewing the images taken by the technician, it did not appear that our baby had developed kidneys. However, he wouldn’t say anything definitively. He instead referred us to a specialist for us to be able to get the final word. He briefly explained what it meant if our baby did not have kidneys. “Not compatible with life”. We were numb. I nervously looked at my cousin, who had tears in her eyes.
After that, we went out to lunch. Before going into the restaurant, I swallowed the lump in my throat and made a phone call to my aunt, my sister and my in-laws. I told them what was going on. We agreed to all pray and fast before the next appointment, which was scheduled for a couple days later. Then we went into the restaurant.
Collin and I were talking about what the doctor had said. I realized that my sweet husband had still not connected that our baby could not survive birth without kidneys. I gently told him. I watched the realization hit him. Then I quickly began talking again about the things we would do in the meantime while we waited for the appointment.
It was an agonizing couple of days, full of tears. I recall saying “There’s no way I could lose a baby. I can’t handle something like that.” The day for the next appointment came. We felt positive that morning. A sense of peace for whatever was going to happen in that appointment. The doctor used fancy ultrasound tools that gave him a clearer picture of our baby. First, he got the gender for us. We were due to have a baby boy! After about 45 minutes, and several different ultrasound tools, the doctor finally confirmed that our baby had not developed kidneys.
We were devastated. We tightly gripped each other’s hands for strength. Our doctor began to explain what to expect. Our baby would swallow the amniotic fluid, which is meant to stretch the lungs. Then it’s supposed to continue a cycle where it gets filtered through kidneys and peed back out. However, without the kidneys to filter the fluid, it wasn’t able to finish the cycle. Eventually he would get to a point where there was virtually no fluid around him. As a result, he wouldn’t be able to swallow any fluid to stretch his lungs. This meant that his lungs would no longer be developing and as a result, he would not be able to get a sufficient amount of oxygen upon his first breath after birth and he would pass soon after.
This was difficult for us to hear. We both put on strong faces as the doctor continued to talk. At this point, he said that as a doctor he has to go off of the facts and those were that there was no way for our baby to survive. Then he said that as a person, he believed that there was absolutely room for hope. He said that he had seen many things in his career that could only be explained as miracles. He told us that he had to ask if we wanted to continue the pregnancy. Without hesitation, we both agreed to carry him as long as possible.
After the appointment ended, we went back to our car in the parking lot and we both lost it. We were both crying and hugging and holding each other. I remember this feeling of “why me?” and I felt like it was so unfair. I had already been through enough hard things in life, right? We composed ourselves enough to start making the phone calls to update family. Those were very hard. We called my aunt and uncle, Collin’s parents, and my sister. We cried more with each phone call. We left 2 hours later, once we felt composed enough to travel home. It was about a 30 minute drive back home.
A few days later, I remember feeling like I needed to do something. I had heard about a Washington senator who had experienced the same diagnosis with her daughter. They ended up finding a doctor who would inject saline into her uterus for her baby to swallow and develop her lungs. When her baby was born, she was put on dialysis and had to wait at least one year to get a kidney. I did not feel like this was what I needed to do. One reason being that most doctors did not find it to be ethically okay, so it would be hard enough to find a doctor that would agree to do it for us. And another being that dialysis is already hard on an adult, so it would be even harder for an infant.
As I tried to figure out what to do, I came upon another story of a woman who had a similar experience. She had been told her baby did not develop kidneys and would not survive. Well, near the end of the pregnancy, the baby suddenly had kidneys. It was a miracle. That baby survived. After reading that story, I realized that the best thing I could do was have hope. To believe in my son’s ability to receive a miracle. I started talking to my husband about it and trying to raise his hope. We decided to continue shopping for our son as if he would survive. It was very therapeutic for us.
Here’s where people began to misunderstand our choice to have hope: Family and friends that we shared our son’s story with began to think that we didn’t recognize the reality of the situation. They confused our hope with denial. They thought that we fully believed our son would survive birth and that there was no chance of losing him. This was false. We absolutely understood the reality of the situation. We knew it was more likely that he would pass than survive, but focusing on that did not uplift us. We did not want to look back on our time with him and only see ourselves gloomy and waiting for him to die. We wanted to look back and see the hope and see that we did SOMETHING to cherish that time with him.
This misunderstanding made things awkward. I had a sister who was pregnant at the same time as me. I would hear family excitedly talking about her baby and her pregnancy, but when I brought up our baby and my pregnancy, it usually was a short and awkward conversation because nobody wanted to focus on the baby that was going to die. It was an incredibly lonely feeling. Collin and I could only talk to one another about it.
About 2 months before my due date, we decided to move back to home so we could be near family when our son was born. We got a new doctor set up quickly and got a tour of the hospital that recently had upgraded it’s NICU to a level 4. About a month later, I went to my 34 week appointment. I asked the doctor what to expect when I went into labor. I wanted to know if I would even have a “water” to break since there was virtually no fluid left around our baby. He assured me that I would not experience a “water breaking” moment because of the lack of fluid.
A couple days later, my water broke. I had noticed earlier in the day that my tummy seemed to have “dropped’ quite a bit. My husband was working potato harvest, so when he came home that evening, he commented on how low my belly looked, too. We went on a date that night since he wouldn’t be working the next day. We went to Red Lobster for my first time and then we decided to do some more baby shopping. We bought a car seat, and a baby chair.
When we got home, I sat down to snack on some pineapple. When I got up, I felt a pop. I told my husband to continue to the bedroom without me and then I went straight to the bathroom. Fluid was flowing out of me. I quickly went downstairs to my husband and said “We have a problem. I think my water broke.” He went into a panic and told me to call my sister and ask her if that’s what was going on. I laughed and told him we could just go upstairs and ask my aunt, who had delivered 7 babies herself. We were living with my aunt and uncle during that time.
My heart was pounding. I was so worried about our baby. I needed to hear his heartbeat, I needed to know he was still alive. I had bought a Doppler for this very purpose, weeks before we found out about his diagnosis. I quickly grabbed it and started searching for that familiar thump thumping. After a few quiet seconds, I finally located it. So we went upstairs to let my aunt know what was going on.
Things got exciting at home. Collin gave me a blessing. Then we headed to a 24 hour urgent care. We wanted them to test the fluid and confirm if my water had broken. I found myself continuing to worry about our son. I was so nervous as they set things up for an ultrasound. I was terrified I wasn’t going to see his heart beating. I didn’t want to ever have to experience that. As soon as I saw the flicker, I breathed a huge sigh of relief. He was doing just fine.
The litmus paper test for the fluid was inconclusive, but the doctor at the urgent care had talked to my doctor and they both had decided that I needed to go to labor and delivery. At first they were going to send me in an ambulance, but then we were able to talk them into letting us go in our own car. They just made us promise that we would go right there and we would not stop for food on the way.
It took us about 20 minutes to get to the hospital. There was a security guard waiting for us at the ER entrance. He took me in a wheelchair through the maze of the hospital to Labor and Delivery. I was put into a triage room. A nurse came in and did a more official test to clarify if my water had broken. We waited about 45 minutes for the results. It was positive.
They moved me into an official delivery room. A doctor came in to speak with me and to start going over all the details. My sister in California began getting her things together so she could quickly make the drive to Washington to be there for me and my husband. We were told that I could have a day to let my body naturally go into labor. The next evening they would induce me if I didn’t start labor.
One thing that sticks out the most to me is that as soon as I got checked in as a patient, I was told that I wouldn’t be leaving the hospital until our baby was born. All of this happened on a Saturday. The next day, Sunday, we played the waiting game to see if I would go into labor. We also had to make some big decisions regarding our son. I still was very hopeful at this point, but I also had the weight of reality pushing down on me. We had to decide if I would have a heartbeat monitor for our baby during labor, and if we were going to sign a “Do Not Resuscitate” order for our son in the event that he would pass away. We took some time to discuss these important matters. We chose to not have the heartbeat monitor and we signed the DNR order.
Signing that paper felt like one of the worst things I could do as a mother, but I knew that if he did pass away, it would have been torture to watch them revive him again and again only to watch him pass again and again. The rest of the day we mostly talked with family that stayed at the hospital with us, but I also walked the halls and tried to do whatever I could think of to help my body. No luck! So I got induced with cervadil.
They told me it probably wouldn’t be enough to throw me into full labor, but they would evaluate things as we went. Well, 2 hours after administering the cervadil, I was in full on labor. Contractions on top of contractions. I did nothing to prepare myself for that misery! I did my best to keep moving since that seemed to help. I sat at the end of my bed with my legs apart, my hands on each leg, and I rocked back and forth with the contractions. It seemed to help the most, but I was still miserable.
My nurse kept giving me pain meds to try and alleviate the pain. I think she didn’t believe I was in as much pain as I was. After the second dose of fentanyl and the second reaction to it of throwing up, she finally checked me and decided to offer me an epidural. I gladly accepted it. Once I got the epidural, I could finally relax and go to sleep.
I woke up hours later, with the urge to poop. I told my nurse. She checked me and told me I was fully dilated. The current doctor on call made me very uncomfortable, so I pleaded to the nurses to not let him deliver our baby. They said that because of the circumstances we were in, they would do their best to get the other on call doctor for the next shift to come in earlier to deliver our son. So we played the waiting game as the nurse worked hard to get the other doctor in.
Family started showing up to the hospital so they could be around once our baby was born. The nurse was successful in getting the other doctor to come in early, which was a huge relief for me. Everything went so fast after he showed up. The bed was broken down for delivery, the doctor gowned up, and everything was set in place. Finally it was time to start pushing.
We actually had a pretty pleasant conversation while I pushed. I was so relaxed because of the epidural. The doctor had to be extra careful because our son was breech, so he was delivering our baby butt first. This was only allowed because of our son’s chances for survival. They said that it made no sense to perform a c-section on me and put me at risk, if our son’s chances of survival were non-existent. I was very comfortable having a breech, vaginal delivery.
At 7:48, our son was born. Noah Austin Pound. As they brought him to my chest, I heard my little boy struggle to take a breath. And then he quietly passed. In my head I was begging him to come back to me. Then I felt a peace overcome me and I knew that my little boy had completed his life on earth.
The next several hours were spent taking him in. Looking at his sweet little body and how perfect it looked. You wouldn’t have known there were no kidney’s in that little body. I gave him a sponge bath, we dressed him, we took pictures. We cherished the moments. Then there were the tears. Lots and lots of tears shed. Lots of thinking “This isn’t fair. He’s so perfect”.
We stayed another night in the hospital. Anytime I wanted Noah, the nurses would bring him to me. When they took him back, they put him somewhere that made him very cold. They would always wrap him up in a warm blanket when they brought him to me.
Each time I would hold him again, I would lose it. I would experience all the emotions again until I landed on acceptance.
The next day, I dragged the day out as long as I could. Then came the time to have the mortician come take Noah’s body. That was very difficult for me. I never wanted to stop holding him. I knew our time together was coming to an end. After spending every moment with someone for months, especially someone who was inside you, it makes a difference when they are suddenly gone.
Noah was the best thing to happen to me and to us. I would never wish this experience on anyone, but I have seen so much growth in me and in mine and my husband’s relationship as a result. I continue to learn things from this experience.
I love to talk about Noah. There is a new stigma we face where people get uncomfortable when we mention him or tell them his story. That makes me sad. The best thing anyone could do for me is say his name and acknowledge that he lived and that he meant something to us. I know it seems difficult to talk to somebody about the child they lost, but you will not hurt them by mentioning their child. Ever.
Noah would have been 3 this year. He has 2 sisters now, Lucy who is 2 and Ellie who is 8 months. They will always know they have a big brother looking over them. I will always cherish our memories with Noah. I’m a better mom today because of him. Happy birthday, buddy!
♥ four young boys and a boy dog (offspring)