In early 2016, Rachel and Steve of Arcadia Valley, MO were living a full and busy life. They owned and managed a farm, had two dogs, and were raising 5 children ranging in age from 3 to 16 years. Steve traveled often with his job. Rachel home-schooled their 5 children. Both maintained the farm and were active in their church. Rachel and Steve had a plan for their future, but God was working to prepare them for a different plan. Rachel became pregnant with baby #6 at age 41. She, Steve and the whole family looked forward to what this new addition would bring to their family.
The day of her first pregnancy ultrasound around 16-18 weeks gestation, Rachel was multi-tasking as usual and brought her children along to her OBGYN visit. The tech noted that the baby’s bladder was exceptionally large, so she dialed up the doctor for an additional video chat consult. Rachel felt the tech was being more evasive than usual, but she wasn’t sure if it was due to real concern, or because of the presence of her children. Rachel’s doctor informed her that the baby’s enlarged bladder could indicate a possible genetic syndrome; however, Rachel had already had genetic testing done (because of her advance maternal age) which had not indicated any areas of concern. Rachel and her doctor agreed that she would return to the office on Monday to re-evaluate.
That Monday, the baby’s bladder was still full. Rachel was introduced to a pediatric urologist, and a fetal-maternal medicine consult was ordered because Rachel’s OBGYN felt she needed ongoing frequent ultrasounds. Her doctor suspected the baby had what’s known as “bladder outlet obstruction”, which occurs in about 1 in 5,000 live births and is a blockage at the end of the bladder. Bladder outlet obstruction reduces or stops the flow of urine into the urethra – the tube that carries urine out of the body and it prevents urine flow into the amniotic fluid which can cause the level of amniotic fluid to become very low. Low amniotic fluid levels can impair the developing lungs causing them to become very small, and If the blockage persists, the kidneys will become damaged. Ultrasound images are used to assess the size of the bladder, and changes in the appearance of the kidneys. Ultrasounds are also is used to check fluid variations around the baby. Driving 2 hours from home every other week for ultrasounds, while managing family, work and other responsibilities was no small task; however the baby’s safety and viability was dependent on it.
On Memorial Day weekend of 2016, Rachel’s ultrasound had an alarming finding. Her amniotic fluid was completely gone, and the baby’s bladder was larger than it had ever been. Her team admitted her to the hospital immediately with anticipation of bedrest and 24 hour fetal monitoring to follow. Surprisingly and gratefully, the baby showed no acute signs of distress. Rachel was prepped for a possible early delivery, despite the fact that she wasn’t supposed to deliver until August. For the next two weeks, Rachel was separated from her kids at home, remained on bedrest and had ultrasounds every other day. She hoped for the best while the baby continued to show signs of stability. Many friends and community members stepped up to help the family manage at home while Rachel remained in the hospital.
One day in mid-June, Rachel had an ultrasound. The findings on THIS ultrasound were completely different that any that she had had in the past. The baby’s bladder was completely flat, and all of her amniotic fluid was back. It seemed that the blockage had burst and the miracle Rachel had been praying for had happened. Rachel’s care team had a renewed sense of cautious optimism, and on June 19, they discharged Rachel home with plans to closely observe her and the baby. Rachel traveled to the hospital every 3 days for ultrasound appointments. Her water broke about one month early on July 9, and Baby Charlie made his entrance to the world. Because of Rachel’s persistently low amniotic fluid levels, Charlie “popped” a tiny hold in his lung and was admitted to the hospital’s neonatal intensive care unit for observation. Fortunately he was able to maintain proper oxygen levels with nasal flow oxygen only. The next day, just when Rachel was feeling a little sense of relief, she received a call from her mother, who relayed that she was diagnosed with breast cancer. Rachel’s mom had been a huge resource in helping take care of her other 5 children through the course of this difficult pregnancy, so hearing this news only enhanced Rachel’s sense of vulnerability and powerlessness. Rachel held onto faith that she and Charlie would get to go home soon, which would allow her to return to care for her other kids and also now care for her mom. Unfortunately for all, Charlie had other plans. Charlie had bloodwork drawn the following morning which revealed a dangerously high creatinine level. A creatinine test is a measure of how well your kidneys are performing their job of filtering waste from your blood. Charlie’s care team promptly planned for his transport to SSM Health Cardinal Glennon Children’s Hospital. Charlie needed access to a team of pediatric specialists, including but not limited to nephrology and urology. The transport team arrived, and took him to the Dana Brown Neonatal Intensive Care Unit at SSM Health Cardinal Glennon.
Rachel was admittedly devastated and angry. His blockage had seemed to go away, so she didn’t understand what was happening. She was able to be discharged and both she and Steve traveled shortly behind the ambulance to get to Cardinal Glennon. The first person that they met when they arrived was SLUCare physician, Craig Belsha, MD – board certified pediatric nephrologist and Division Director of Pediatric Nephrology at SSM Health Cardinal Glennon. “He told me that Charlie was in stage 5 kidney failure,” Rachel said. “He and his colleagues described the worst possible scenarios that I could expect, including dialysis, possible transplant, even death,” said Rachel. “They told me to expect being hospitalized for a good 6 months and to start making plans accordingly,” Rachel said. “Looking back on that day now, I know they needed to tell me those things, and they did so with as much empathy and transparency as possible. But I remember how extremely angry I was with the world and with God,” Rachel said. “I was totally shocked and unprepared to hear that Charlie was in kidney failure. I felt powerless and had no idea how I’d navigate my world from inside the walls of this NICU,” said Rachel. “Charlie had his dialysis catheter placed one week after he was born, and my mother had a double mastectomy the same day,” said Rachel.
“Room 1885 in the NICU became our home away from home for a total of 99 days,” said Rachel. “I had certain things that I wanted control over, since I had seemed to lose control over so much of my life. I was adamant that Charlie wouldn’t have a feeding tube and I was adamant that I wasn’t going to make friends with other NICU moms. I didn’t want to be a part of this club, so I kept to myself and just talked to God,” said Rachel. “About three to four weeks into our stay in the NICU, I had a dream one night while I was sleeping. In my dream I saw Jesus standing over Charlie. He was looking at Charlie and saying everything was going to be okay. Holding on to that dream was what gave me hope for the next several weeks, months and years. From that night forward, I leaned into that, and started accepting what I did and didn’t have control over,” said Rachel.
Throughout the next several weeks and months, Rachel found focus and purpose inside those 4 walls. “No one wants to be in the NICU mom club, and I think each of us have to navigate our way through it. I will say that I found much healing for my own hurt and anger by coming alongside the other NICU moms, and trying to help the newly admitted moms navigate their way through their hurt, anger and fears,” said Rachel. “I made several lasting friendships not only with NICU moms, but NICU nurses, as well.”
“I can’t sing the praises of Charlie’s primary team enough. Dr. Belsha, our occupational therapist, our dialysis nurses – each of them supported Charlie and supported my goals to get him home with the least amount of everything. Our OT knew I didn’t want Charlie tube-fed, and she was willing to do what it took to make that happen. She came 2-3 times per day and worked with him AND me so that we could confidently meet his nutritional needs. His dialysis nurses were like my rocks- always available for questions, and with the sense of humor I needed to wrap my arms around what I was going to be doing at home. Even though I had practiced as a dialysis nurse in my career, this was my own child and so very different from adult dialysis,” Rachel said.
Charlie was discharged home on October 9, 2016 after spending 96 days in the NICU and 3 days on the Transitional Care Unit (TCU). He was sent home receiving continuous peritoneal dialysis for 18 hours per day. Peritoneal dialysis is a way to remove waste products from your blood when your kidneys can’t adequately do the job any longer. During peritoneal dialysis, a cleansing fluid flows through a tube (catheter) into part of the abdomen. The lining of the abdomen (the peritoneum) acts as a filter and removes waste products from the blood. After a set period of time, the fluid with the filtered waste products flows out of your abdomen and is discarded.
Over the next two years, Charlie weaned from 18 hours to 12 hours per day, and the pattern of life and appointments that Rachel and her family adjusted to became as “routine” as such a routine can be. In early 2019, Charlie finally reached the height and weight requirements for transplant, and his team felt it was time to move forward. Rachel and Steve consulted with the newest member of Charlie’s care team, Dr. Chintalapati Varma – a kidney and liver transplant surgeon at SSM Health Cardinal Glennon Children’s Hospital and SSM Health Saint Louis University Hospital. Charlie was placed on the list for a kidney transplant in March 2019.
“When you are on the transplant list, you hope that nothing lowers your chances of being a candidate. Unfortunately Charlie got sick later that year, and we had to go off the list for a long time,” said Rachel. Charlie contracted Epstein Barr Virus (EBV), one of the most common viruses in humans. After an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. Transplant recipients are treated with immunosuppressive drugs to avoid rejection of the transplanted organ. As the medication impairs the immune response, it also increases the risk of serious infections, re-activation of latent viruses and cancer in transplant recipients compared with the general population. Charlie started weekly infusions of intravenous immune globulin (IVIG) to supplement his own immune system. “He fought off this EBV for what seemed like forever,” said Rachel. His blood titers were high for months and months. We never thought he would get to the point where he could safely go back on the waiting list for a donor kidney.
The next part our story is hard for many people to believe. Our circumstances changed almost immediately following a visit to church one Sunday in early 2020,” said Rachel. “Our pastor, as he routinely does, asked if anyone had any special intentions to pray for. Our son, Max, approached him and announced that his brother wasn’t getting any better. It was so difficult to see his pain, but at the same time so beautiful to see him be so honest about his feelings. The whole congregation rallied and prayed for us that day and I truly believe it was that intentional group prayer that influenced what we found with Charlie at our next hospital visit that Monday,” Rachel said. Charlie had bloodwork as he always did at his clinic visit that Monday. “His EBV numbers had dropped from 36,000 to 0. There was no explanation for it, but there were no traces of EBV in his system,” Rachel said. In March 2020, Charlie was placed back on the list for a transplant. Hope was restored for Charlie’s family, and just days later, the COVID-19 pandemic began. “As a family waiting for a transplant, it is hard to know what to pray for,” Rachel said. “The thought of a worldwide pandemic plus the thought of another family having to experience unfathomable loss in order for YOUR loved one to live, was truly overwhelming at times,” Rachel admitted. “We left it in God’s hands, and His timing,” said Rachel.
In September 2020, Rachel and Steve got a call from the transplant coordinator about a potential donor for Charlie. Filled with a roller coaster of emotion, they brought him to the hospital late that afternoon. “It seemed so chaotic with all that needed to happen. We knew nothing about the history of this potential donor, and Charlie was in for a night of tests, procedures and exams. He needed IVIG infused over several hours, a CT scan, bloodwork, a COVID-19 test, and so much more. Our minds were racing, none of us slept with all of this happening into the wee hours of the night and there was something that just didn’t feel right. Dr. Belsha came to see us first thing early the next morning, and I remember just unloading on him. I was upset over so many things; upset with everyone around me and Steve and I were nipping at each other. While I couldn’t nail it down, I had a feeling in my gut that something was wrong. Dr. Belsha listened, and listened intently as I poured my frustrations out to him. He gave me the response I wasn’t expecting, but retrospectively, I needed to hear. He told Steve and I that this was not our kidney. He said that that we would pass on this one – that he was worried about Steve and I as a couple, and that he felt we would regret it if anything went wrong,” Rachel said. He recommended that we take Charlie off the list for a bit and revisit it if Charlie’s condition worsened,” Rachel said.
Later that fall, Charlie and his parents met a new addition to their care team. Amanda, a new transplant coordinator would be working with Charlie’s family. Amanda is a kidney transplant recipient, herself x 2! She received two donor kidneys at different times in her life– one from a live donor and one from a deceased donor. Rachel found comfort in Amanda’s experience and rapport. That rapport was something Rachel leaned on throughout late 2020 and early 2021, as Charlie’s health had some challenges and his condition, once again took a turn for the worse. Charlie was hospitalized twice for peritonitis – a peritoneal dialysis-related infection caused by bacteria entering the abdomen from outside the body and infecting the peritoneum. “It seemed like one gut punch after another,” Rachel said. “We were all worried that we could lose his dialysis catheter due to infection, and that one more insult would be the one Charlie couldn’t recover from. During one of those admissions, Dr. Belsha wasn’t on service, but he came to visit us multiple times. We had some crucial heart-to-heart talks, and we knew it was time to go back on the transplant list. We put Charlie back on the list a second time for a transplant,” Rachel said.
Spring of 2021 brought blessings of new hope for Rachel and Steve. A fellow church member who was a friend of their son, Max approached them with interest in donating her kidney to Charlie. “Gaby knew all about Charlie’s history from talking with Max, and she asked our permission to begin the screening process for donation,” Rachel said. “She completed all of the testing between summer and fall, and we learned that she was a 4 point match, which is comparable or better than a sibling match. She got a gold star of approval, and from that point on, we knew she would be Charlie’s donor,” said Rachel.
Still in the midst of the COVID-19 pandemic, and with winter holidays approaching, Charlie’s family and transplant team elected to plan his transplant surgery at the beginning of the new year. “It was a very special holiday season for us. Steve and I needed that time with each other, and we needed that time as a family. We knew that transplant wasn’t a cure for Charlie and that we would just be trading one set of challenges for another. Having a few months to prepare ourselves mentally was a blessing. It allowed us to look at this next chapter through a much more grateful lens,” Rachel said. “I bought Dr. Belsha a journal as a Christmas gift. Inside the cover I told him thank you for our last chapter….and that it was time for the next chapter,” Rachel said. “He told me he had been praying, that it was time, and that he agreed,” Rachel said. Transplant day arrived January 27, 2022. Gaby was admitted to SSM Health St. University Hospital. Charlie was admitted to SSM Health Cardinal Glennon. “The night before transplant, I talked to Dr. Belsha,” Rachel said. “Tomorrow begins a new journey,” he said. “It is a testament that Dr. Belsha is always listening and that he ponders his words. I love that about him,” Rachel said. “He told me that he had been praying, and that this was the right time and the right kidney.”
“Charlie arrived at the hospital wearing his tuxedo,” Rachel said proudly. “His sister Sadie dressed him and told him he was going in like a BOSS.” Surgery lasted 5-6 hours and Charlie recovered in the Pediatric Intensive Care Unit. He continued recovery in the PICU for 6 days, and them spent the next two weeks in the Transitional Care Unit before being discharged home. “There may not be any more dialysis to manage at home, but we certainly have a full plate of new responsibilities to unpack and manage – practically, financially and emotionally. Charlie has 14 different medications; some of which he takes multiple times per day. His co-pay for his anti-rejection medicine is $800/ month. Mid-America Transplant generously covered the first few months, as we figure out how we will do that as a family moving forward. Charlie will be taking it for the rest of his life, so planning for long term is key. We have labs and doctor visits twice weekly, and we are gradually learning what we need to look for to know if Charlie isn’t feeling well. We also keep Gaby in the front of our thoughts. We pray for her health and will always feel a responsibility toward her for the immense gift that she gave Charlie,” said Rachel.
“Starting this new post-transplant chapter, I feel like I did when we began in the NICU. I often feel scared, helpless, and like I don’t know what’s going on. It definitely is like having PTSD. Parents who have experienced complex or traumatic medical events or situations with their child – can have these waves and varying degrees of anxiety, stress, fear, shock, helplessness. I thank God for the people at Glennon who have been there for Charlie and for our family through all of this. Because of them, we are not just survivors, but Charlie THRIVES! He does more than I could ever think or imagine, and and I can’t put a price tag on how they have impacted our lives. Beth was our dialysis nurse who had known us since the NICU. Mary, from dialysis, was our rock. Whether she helped us troubleshoot from home, or whether she came in on call (multiple times) to meet us at the hospital on holidays (I remember Thanksgiving, Valentine’s Day and more), she always got us through our crises. Judy was our chaplain from day one in the NICU and still checks on us all the time. Kathy from Footprints will always bring me chocolate when we are in the hospital, and she helped me acquire many of Charlie’s supply/equipment needs as we prepared for dialysis at home. Amanda, our transplant coordinator, gave us her cell phone on day one, and I literally call her multiple times per day sometimes. She never makes me feel like my questions are silly, and I always learn from her words of wisdom. Kaitlyn from Child Life rode with Charlie on the stretcher to the operating room. Molly Kate from Child Life coached Charlie through the procedure of getting his central line out and explains the hard things to Charlie when we, as his parents, can’t find the right words. Abbie from Child Life even brought snow in from the outside to play with since Charlie’s transplant isolation and recovery this past February wouldn’t allow him to play outside,” Rachel said. “He LOVES Debbie from the IVIG infusion clinic. He will lay in bed and yell ‘DEBBIE, I need you!’ And she always laughs and answers him. They have a very sweet relationship, Rachel said. “Ann the nurse practitioner for nephrology handles my sarcasm and always has a smile. Dr. Varma handles every difficult moment I throw his way with much grace and soft spoken kindness. And Dr. Belsha will forever be in our thoughts and prayers. He has seen me on my worst days and his love for my whole family is very evident.” Rachel said.
“Charlie has taught us all to enjoy the small things in life, like being able to take a bath and lay on his belly, a first in his five years of life. Charlie enjoys his life because of answered prayers and all the people who make up Cardinal Glennon from housekeeping to every doctor and surgeon and nurse and lab technician. Cardinal Glennon is like a huge machine and to run smoothly we need every little part. Trust me his favorite people after transplant, were the people who brought his food,” Rachel exclaims!
“There are not enough ways to recognize the team that continues to be part of our journey here at Cardinal Glennon. I could write a book about how much I love everyone,” Rachel said. “The fact that we have all made it and continue to live fully as a family is a testament to their excellence, how well they listen, and a level of compassion that is unmatched.”