“I’m so sorry but your baby has no amniotic fluid. I don’t think he has any kidneys.”
When I was a little girl, I dreamed of being a mama. I carried my baby dolls with me everywhere I went. I played babies for hours and stuffed pillows under my shirt. I dreamed of the day I would have a house full of my own babies. I just never thought it would be something that was so hard for me to achieve.
My husband and I got married young. I was 19 and he was 22. We were told it wouldn’t work. We were asked why we were rushing it. But I knew this man was going to be my husband from the time I was 16 years old and we were tired of making a long distance relationship work. And, I thought, we were ready.
For better or for worse came on our wedding night. My brand new husband got horribly sick with a nasty cold and by the next morning I had it too. For some reason, we decided to go on our honeymoon anyways and traveled for 8 hours to Canada. We spent that week not soaking up newly wedded bliss but lying on separate couches in the little cabin we had rented, coughing and miserable. He got better before I did and by the time we were scheduled to go home, I was finally well enough to go and do a little sightseeing. We flew back to my hometown and the next day turned around and began the long drive to Texas, where my husband lived and worked.
Texas held a lot of new challenges for me. For starters, I grew up in a small town where the summers never got above 90 degrees. On my first day in Texas, moving my belongings into my husband’s third story apartment, it was 108 degrees and climbing. The traffic was terrifying and I refused to drive in the city for months. Not long after moving there, what I can only describe as raging depression hit me and, thankfully, my sweet husband weathered it all. But the hardest part of those first few months was still to come.
About two months into our marriage, I went to see a doctor because I had been feeling run down and occasionally nauseous. I had taken a few pregnancy tests but they had come back negative so I figured it had to be something else. I’ll never forget the giant smile on the doctor’s face when she came in and congratulated me on being pregnant. I sat there in shock and just nodded along. She sent me next door to make my first prenatal appointment and told me to come back after the baby was born so she could be their primary doctor. I wish I had known then that it shouldn’t have taken that long for the test to come back positive. Maybe then I would’ve been more prepared for what came next.
Miscarriage. It’s an ugly word that meant almost nothing to me until two weeks later as I rushed to the ER, praying and begging for my baby to be okay. Several hours later, there was no heartbeat. In fact, there was nothing to be seen on the ultrasound at all. That baby was gone and the only proof I had was that a doctor had told me that I had had a positive test weeks before. I went home, alone, to our apartment (we had moved to a bigger one about a month in) and sat on the floor since we were still waiting for our furniture to be delivered. It then felt like I didn’t get off that floor for the next couple of months as I just grieved and tried to process what had happened. It made no sense and I was sure that, somehow, it was my fault. Our baby, who we nicknamed Jack, was just gone.
A few months later, I wanted to try again. I became obsessed with wanting another baby. But for some reason, my periods didn’t return for 6 months. My obgyn tried progesterone pills and birth control to try and regulate my body again. After a year total, my cycles were finally regular again but we still couldn’t get pregnant. I saw a functional medicine doctor and started learning more about where my body was out balance, but, again, every test was negative and every negative test broke me more and more.
In fall of 2015, I started nursing school and having a baby was put on hold. We decided to see a fertility specialist that fall but didn’t plan to act on any of the information until nursing school was almost finished. After tons of tests, they told us they couldn’t find anything wrong, something called unexplained infertility. They told us we could start with Clomid, a pill that would help with ovulation that would cost around $500 a cycle. It reinforced our decision to wait so we could also save up for several cycles.
In February of 2016, I started feeling really run down and tired, which I figured was just from being in nursing school. I started drinking more and more coffee and just thought that I had missed my period from stress. Finally, one early morning as I was getting ready for school, I decided to take a test just to rule it out. And to my surprise, it came back positive. It was finally happening. I was finally going to have a baby. But the initial excitement was quickly replaced by the fear of losing this baby too. I quickly packed up and went to school and tried not to think about it. I had 4 hours of lectures followed by labs and studying to get through for the rest of the day. Of course, it was all I could think about.
Not long after getting a positive test, I developed a condition called hyperemesis gravidarum, also known as extreme morning sickness. I could barely eat and was constantly nauseous, vomiting at least six times a night when it was at its worst. I called my doctor for my first prenatal appointment and asked if I could come in a few weeks earlier than normal because I had been so sick. They agreed and the date was set.
Before I could get there I started bleeding again. I cried, praying all the way to the emergency room, the same one I had visited two years before, that my baby was okay. This time when the ultrasound started, the tech told me I would see a little fluttering movement and that was my baby’s heartbeat. Relief flooded over me. There was teeny babe on the screen and the baby had a heartbeat. I was told I had two subchorionic hematomas on either side of the baby and that I needed to go on bedrest until they cleared up. I dropped out of nursing school to abide by my doctor’s orders. Eventually the bleeds cleared up and our worry dissolved into happy expectation.
In April we learned we would be having a little boy. We started discussing names but couldn’t agree on one. By May it was time for our anatomy scan. We paid extra to have the whole thing recorded. The tech was quiet, pushing a lot on my right hip to get good pictures of the baby. I didn’t see anything wrong. He went out after not too long and brought back the doctor, who was a friend of ours from church. And that’s when she said it.
“I’m so sorry but your baby has no amniotic fluid. I don’t think he has any kidneys.”
Our whole world stopped with those two sentences. She took another look and thought she saw a kidney, bringing up a possibility of a problem with the placenta. They would check again in two weeks. Those weeks were long and agonizing. But when we went back there was even less fluid. And that was when we confirmed our boy had bilateral renal agenesis – his kidneys had failed to form. The doctor told us there was nothing else to do – without kidneys he wouldn’t make his own amniotic fluid. And without amniotic fluid to swallow and practice breathing, his lungs wouldn’t develop. He would either be stillborn or die within a few hours of birth.
We decided not to take this as our answer after hearing about a process called amnioinfusions and the first baby to survive without kidneys. In a nutshell, it was an experimental treatment where doctors replace the lost amniotic fluid at various intervals with normal saline using either a long needle or a port.
So we left Texas for Cincinnati, on one way tickets, with no idea when we would be back, to take place in the clinical trial at Cincinnati Children’s Hospital. We started tests on our 3rd wedding anniversary. A week later, at 24 weeks, after confirming the baby had no kidneys and no other defects other than small lungs, I had surgery to have an amnioport placed. I ended up on bed rest of another nine weeks in preterm labor until my water broke at 32 weeks. They managed to stop my labor for 5 days – and then Judah Nathaniel Oliver Beorn Morgan was born on August 22, 2016 at 2:10pm. He had to be resuscitated at birth. He went from blue to pink. He as alive.
We had a lot of up and downs. At 1 week old we were told we were out of dialysis options. We told them to keep trying. And, miracle of miracles, he was successfully on dialysis. His breathing tube was taken out at three weeks old but he was too weak to handle breathing on his own and it was put back in after 5 hours. We celebrated both mine and my husband’s birthdays with him. We celebrated Halloween and dressed him like Yoda. In early November they took his breathing tube out again and he was able to stay off the ventilator. He moved into a big boy crib. He got his own private room. We read him stories, held him, watched football with him, dressed him in clothes I thought we would never use. He got a bad respiratory virus over Thanksgiving right as we were starting to discuss transferring him home to Texas. Then his dialysis catheter stopped working, leading to two surgeries in three days. He had a few scares with his breathing but pulled through. We continued the conversation about Texas.
He would need to be flown on a medical plane but our insurance refused to cover it. We managed to find a charity, Charity Air Ambulance, to fly him home. And then a bed opened up just before Christmas. I flew back with my baby in a tiny plane with a nurse and an EMT. We were home but we didn’t know it would turn out to be a bad decision. I don’t like discussing a lot of what happened next – the hospital made mistakes. Judah got sick and we almost lost him during a 30 minute code. But he recovered. We moved from the NICU to the PICU. The staff made mistake after mistake and we tried to keep them accountable. But it was always too late. On February 23, 2017, just a day after turning six months old, Judah turned blue in my arms. They called a code. They resuscitated him. By the next morning, we were told there was nothing left to do. His blood was too acidic and his blood pressure was too low for dialysis. After gathering with friends, taking him outside to sing worship songs in the NICU garden, sleeping in the same bed as him for the first and last time as a family, and being told more organs were starting to fail the next morning, we made the choice to let him go. He passed from my arms into the arms of Jesus on February 25, 2017 at 11:05am. Our boy was gone.
There was a numbness that followed immediately. I let our friends convince me to eat for the first time since he coded while another friend helped the nurse bathe and dress him. We held him one last time. We cried together, holding his cold, swollen little body in our arms. I still can’t look at those pictures but I’m glad we have them. We were driven home and announced his passing. Friends brought us groceries and sat with us. I was somehow pulled together the first day while my husband was crying – one of only a handful of times I’ve seen him cry in our eight years together. The next day I shattered.
We said goodbye to our boy in a memorial service inside a beautiful chapel. Usually it’s booked for years in advance for weddings. But the weekend we were having his memorial, there was nothing scheduled. An anonymous donor paid for his funeral. I knelt in front of his casket for I don’t know how long. He looked so peaceful, like he was just sleeping. And then the lid of his tiny coffin was shut and I never saw him again and never will on this earth.
Two months after he passed away, we were surprised to learn we were expecting again. We had just assumed it would take another two years. But I believe Judah saw our tears and asked God to send us a baby boy to help heal our hearts. And that boy has done just that.
One year to the day that Judah coded for the first time, we welcomed our sweet Arthur into the world. He looked nothing like his brother but was everything we needed. We named him Arthur after one of Judah’s surgeons at Cincinnati Children’s who was amazing with him and because Arthur means “brave as a bear.” Judah’s nickname was Judah Bear. Today, Arthur is three, full of spunk and spirit, and has helped us to keep moving forward. I don’t know what we would’ve done or what would’ve become of us without him.
This past December, we welcomed a sweet little girl into the world named Eleanor. Both of our babies are perfectly healthy, with two kidneys and strong lungs. We have no idea why Judah’s kidneys failed to develop and we probably never will. But we do know this – we were tested in the most awful way possible and we have come out the other side. We are changed, for the better, for having known Judah and seen God’s grace and miracles in his life. His story has reached thousands and has given hope to so many other parents facing the same diagnosis. His life has helped doctors further the research into helping these sweet kidney babies. Every year for his birthday, we campaign for donations, mostly physical although some choose to do monetary, for families in the NICU and take them back to the hospital where he died. We leave notes inside explaining why the families are receiving these packages. To date we have donated close to 200 packages to the NICU in his name.
His life was not in vain. To the day we die, we will not let his story be forgotten or his impact be lessened. He’s forever missed like crazy, loved deeply, and he will always live on in our hearts. And, one day, we will hold him in our arms again and meet sweet Jack. It’s a day I long for. One day closer.
Maternity Photos Taken By B Vervloet Photography.
Newborn Photos Taken By ADC Texas Photography.
Read More About Bilateral Renal Agenesis.
Read more about Project Finding Your Rainbow.
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