How We Got Here: Baby Morgan's Story

As I changed into my scrubs that morning, I figured my life wouldn’t be any different. I would back up my backpack, head on campus, sit through a med-surg lecture, and then head to the campus library to study for the afternoon. But then my mind went back to that test sitting on my bathroom sink and my heart started pounding again. I wasn’t expecting it to be positive – for close to three years they had all been negative, leading us to head to doctor after doctor without much luck. I walked into the bathroom and picked up the test. Two lines. I couldn’t believe it. My husband and I, it seemed, were finally going to get the baby we had been praying for.

Not more than a week later, I was headed to the ER, crying and praying, hoping that I wasn’t having a second miscarriage. For the past several weeks I had been tired and nauseous and then that morning I had woken up with severe cramping and spotting. So instead of going to class that morning, I called my husband, who was on his way to work, and went on my way. At an ultrasound a few hours later, I saw my little tiny baby on the screen and heard his wonderful little heartbeat for the first time. Relief flooded over me. Later in the day we were told I had a subchorionic hematoma which was surrounding the baby, most likely from the baby suddenly becoming jolted and tearing away from the lining of the uterus. I was put on modified bed rest and told to follow up with my OB/GYN in a few days. When the OB confirmed it at my appointment the next week, I knew I would have to drop out of nursing school, but I didn’t care – I was more concerned with having a healthy baby. Unfortunately, I had no idea that that could never be the case.

A month passed and the hematoma cleared up, getting me off of bed rest. During that time my nausea had gotten worse and worse, leading to hyperemesis gravidarum, or severe morning sickness. At this point in my pregnancy I had now ended up with two conditions that only occur in 1-2% of pregnancies but the baby’s heartbeat was strong and each wave of nausea and bout of vomiting just made me even more reassured that my baby was okay and growing stronger and stronger. Another month passed and we held a gender reveal party that revealed we were having a boy. This wasn’t the outcome I was totally hoping for but mostly because I had grown up with younger sisters and didn’t have much experience with baby boys. But after the initial shock wore off, I got excited. I was in my second trimester and passed the threat of miscarriage and I felt like I could finally start preparing for our little guy’s arrival. We started buying baby clothes, including an Auburn University jersey when we visited my sister and her daughter in Auburn, AL (my husband’s alma mater). I started to feel him kick and bump around, with his favorite activity being to punch my bladder.

After visiting my sister, we drove a couple hours away to visit Brendan’s parents in Georgia. While we were there I got a call from my OB/GYN saying one of my lab tests was abnormal. The baby had been tested for spinal bifida via a blood test a few days before we left and it had come back with high alpha fetal protein, giving him a 1/110 chance of having a spinal cord defect. We set up an appointment with a maternal fetal specialist for the next week and my months of anxiety (unknown to me) began. We finally made it our 20 week ultrasound with the specialist. For those who don’t know, the 20 week ultrasound is much more in depth than other ultrasounds done previously to check on all the baby’s systems to make sure they are developing correctly. We sat with a genetic counselor first who asked us about our family histories and talked to us about how the high AFPs was most likely due to the bleed at the beginning of my pregnancy and, if not, we only had less than 1% of a chance that there was anything actually wrong with him.

As the ultrasound tech looked at our baby, I relaxed and just enjoyed seeing my baby. I didn’t suspect a thing. Then the doctor came in and told us she was very concerned about our baby. My heart started racing again. She said the baby had almost no amniotic fluid and she thought the baby didn’t have any kidneys. Then she found something that looked like a kidney and two renal arteries so she thought the problem most likely lay with the placenta but the lack of fluid made it hard to tell. She put me back on modified bedrest and scheduled an appointment for two weeks later, hoping that there would be more fluid and they could get better visualization to see what was going on.

Baby Morgan after his first fluid injection.
His facial features are flattened - a common indicator of Potter's

So began another two weeks of anxiety and desperate prayer on the part of my husband and me. When we got to our second appointment, my anxiety was through the roof. I couldn’t sit still and I felt constantly on the verge of tears. When the tech began his examination, all the hope I had been holding onto for the past two weeks disappeared. There was still no fluid and the baby was very compressed and hardly moving. When the doctor came in, she said as far as she could tell there was nothing wrong with the placenta and they couldn’t find any kidneys or renal arteries. She recommended that we prepare ourselves to lose our baby. I couldn’t believe it. After almost three years of prayer and believing we couldn’t have children on our own and being only a few months away from starting fertility treatment, we had gotten pregnant on our own. Now they were telling us that the pregnancy had been doomed from almost the very beginning and we hadn’t had any idea. I felt foolish for getting my hopes and buying baby clothes and a diaper bag. My pregnancy was only half over and it now felt like it had ended abruptly. The baby was still alive and I could feel him moving around but even that felt like a cruel reminder that I could never bring him home. Instead I would once again be childless, and the majority of the world would have no idea that I was a mother two times over because there would be no baby in my arms.

Later in the day, a close friend of mine, after hearing the news, sent me an article about the first baby to survive with no kidneys thanks to a couple of parents who were unwilling to give up on her and the willingness of several doctors to try some risky, experimental procedures in an attempt to save the little girl’s life. So we began to look into it. Johns Hopkins and the doctor who had worked with the first baby, got back to us and told us that they were no longer doing to the procedure. We had also talked to our doctor who gave us the name of another doctor who suggested we try Cincinnati Children’s Hospital, Stanford, and Colorado Fetal Center.  Cincinnati is actively running studies on amnioinfusion and babies with kidney abnormalities and told us they would try and set us up with appointments for an echocardiogram, an ultrasound, and an MRI to see if we were eligible for the treatment. Stanford told us they were working with Texas Children’s Hospital to get board approval to do amnioinfusion to begin their own version of the study and they would contact Texas Children’s to see if they would help. They said they would at least run the tests but had no guarantee that they could do the amnioinfusion.

Either way, if there wasn’t too much damage to the baby, they would then surgically implant an amnioport in my abdomen to deliver normal saline or lactated ringers (an IV solution) into the uterus once to three times a week to try and stimulate the baby’s lung development and keep them from developing too many skeletal and muscular deformities related to the lack of room babies with this condition, called Potter’s Sequence (specifically, in our case, bilateral renal agenesis), usually develop. Without the lung function, no care after birth is possible, since, of course, they can’t breathe. Most Potter babies die from respiratory failure within hours, if they survive birth at all. The goal then would be for the baby to remain in the womb until full term at which point they would deliver the baby and, assuming he had adequate lung function, start him on dialysis. This would require him to stay in the hospital after birth for at least six months to stabilize him on dialysis at which point he could finally come home and have nightly dialysis for the next year and a half, or until he reached a certain weight, at which point he could then receive a kidney transplant. Then, depending on the condition of his bladder, he would need a ureterostomy (where the ureters are attached to the abdominal wall and drain into a bag on the outside of the stomach) until he could have reconstructive surgery on his bladder at age 5.

Baby Morgan after 3 weeks of injections. He's happily
settled with his feet and hands covering his face.

Texas Children’s wasn’t able to get the approval because the board didn’t believe they had the resources to take care of a baby with no bladder. So, very much at the last minute, we bought plane tickets and flew to Cincinnati to begin the testing on the baby. We then spent the next few days getting an electrocardiogram, an ultrasound, an MRI and meeting with the many doctors it would take to care for our baby. Every other system checked out fine, with the exception of a slightly enlarged heart and a small cyst on his lung, both of which the doctors said weren’t really of any concern. After a lot of back and forth on our decision, we decided to go through with the surgery, which took place the next week. I then spent about a week and a half in the hospital in recovery and am now being seen three times a week on an outpatient basis.

We realize this is a long shot. We realize there’s not much hope for our son. But we are refusing to give up. We are believing that God can work a miracle with our little boy and bring him into the world where he will survive and flourish.