Fighting for Jordy, Defying the Odds
Jordy just turned 5 in March and is in 4K. He is such a tender hearted and thoughtful boy. He is such a miracle! Time and time again God brings him through. Here is how Jordy’s story began.
Ryan and Nicole went in for their 20 week ultrasound to find out the gender of their first baby, expecting to find out if they were having a little girl or a little boy, but instead found out Jordy had a blockage in his urethra. At this time they were introduced into a whole new world of learning what that blockage meant. They would later learn that this blockage was called "posterior urethral valves" and that it was not allowing Jordy to urinate. The hospital was also concerned about Jordy's amniotic fluid as a baby's urine is what controls their amniotic fluid levels in the mother's womb. If there is not enough amniotic fluid, the baby cannot grow properly. The hospital decided they would monitor the fluid levels and see what happened.
At 26 weeks pregnant the family found out the amniotic fluid was too low and they were transferred to Madison. That is when their world was turned upside down. The doctor there said that they could not do anything for Jordy unless they did a bladder tap (extracting fluid from the bladder for testing) to check to see if Jordy had any kidney function. They said that there was nothing they could do if there was no kidney function.
They performed the bladder tap in which they inserted a needle through Nicole’s stomach into Jordy’s bladder. Ryan and Nicole come back the next day for results and found that they had ruptured Jordy’s bladder as a result of the procedure. His belly was 6x the size it was before as the fluid from his bladder had spread throughout his body. Their primary doctor had been tied up with a procedure that had gone late so they were told by a doctor they had not seen before that babies in this situation usually do not make it and Jordy is no longer eligible for any life saving interventions. Nicole and Ryan were completely devastated. They waited for their primary doctor and once they were able to speak with her they were told that the other doctor was wrong about being out of options! Their primary doctor had completed her fellowship under a world renowned fetal surgeon and he just happened to have recently moved to Rochester to start the fetal surgery floor at Mayo Rochester! She told them she would contact Mayo to see if they would be eligible for fetal surgery to save Jordy's life.
They were transferred to Mayo the next day to meet with many doctors to talk about fetal surgery which had the very real possibility of inducing labor. They met with Dr. Rodrigo Ruano who was the most incredible man. When he could see the worry on their faces, he asked if they believed in God. They will never forget how he looked at them and said “I WILL FIGHT FOR YOUR BABY’S LIFE.” This meant even more to them as some of the doctors they had met with previously that day were encouraging them to terminate the pregnancy.
Dr. Ruano explained to them that if the bladder tap in Madison had not ruptured Jordy’s bladder, Jordy would have been eligible for a fetal surgery that would have been able to remove the blockage in Jordy’s urethra that was causing all of his issues. However, Dr. Ruano was able to place life saving shunts (small, curly rubber tubes) into his body. The entire surgery was done in utero at 26 weeks all by ultrasound guidance. Jordy had a 50/50 chance of survival if the surgery would have caused Nicole to go into labor. A shunt was placed in Jordy’s belly that would allow the urine that was in his body to flow out into the amniotic fluid and then another shunt in his bladder as an alternate way to allow him to urinate. With constant monitoring the rest of the pregnancy went on as planned.
Nicole was induced at 38 weeks and Jordy was born with stage 3 kidney disease. He was immediately taken away to be monitored and prepared for his surgery that would take place the next day at The Children’s Hospital in Madison. The surgery was performed to remove the blockage in his urethra, which went as planned. Unfortunately, not being able to use his bladder properly for so long created even more problems for Jordy. On top of the kidney damage, his bladder was small and muscular and was causing his urine to reflux back up into his kidneys, causing them to be stretched out and larger than normal. His ureters were also stretched out, damaged and not working properly. (The ureters are narrow tubes that carry urine from the kidneys to the bladder. Muscles in the ureter walls continually tighten and relax, forcing urine downward, away from the kidneys. If urine backs up, or is allowed to stand still, a kidney infection can develop.) So with his ureters not doing their job, his urine was refluxing up to the kidneys.
The family was in the Children’s hospital for three weeks. Jordy went through a lot in those first three weeks of his life while the hospital was trying to figure out how to get his kidneys to function as best as they could. After the family was finally released from the hospital, Jordy did very well at home. It was a relief to be home, but this also came with a lot of continued monitoring. Jordy was able to progress from daily blood draws, to eventually twice weekly blood draws, then after sometime he was able to go to monthly. This was a huge relief because Jordy was a very difficult draw. Frequently, the phlebotomists could not find a vein the day of the draws. After multiple tries, he would have to go back the next day to try again.
As Jordy grew, a solution never came as the family was told that this was a fairly new and rare condition. Jordy has been put through numerous different tests and medications to see if it would help. However, it came with a lot of pain and side effects.
Jordy’s kidney ultrasounds have never looked good since birth (they have always been larger than normal), but as the years went by, his doctors became less concerned about the way his ultrasounds looked as he was stable and they were not getting worse. However, due to the urine reflux, he has been highly susceptible to bladder/kidney infections. When Jordy gets a bladder infection, it escalates very quickly, with extremely high fevers, hallucinations, confusion, and a lot of pain. The family would go through highs and lows but his ultrasound results remained the same. In February 2023, the family went to Mayo in Rochester for Jordy’s specialist appointments and received bad news regarding his ultrasound results for his kidneys. His doctor said they were “horrendously worse” and that they would need to do everything they can to save his kidneys.
Present day, the hospital wants to do a test on Jordy to see if he has an over pressurized bladder. If the test comes back that he has an over pressurized bladder, the hospital's current solution is to put Jordy on a drug that he had been put on when he was younger and had very negative side effects. The fact that they are back to something they previously tried is our primary driver in looking to get Jordy into the top hospital, specializing in pediatric nephrology and urology along with partnering with holistic medicine to help support his body. The drug the hospital wants to try again does not heal or fix anything. It is a temporary bandaid that will cause other parts of his body to deteriorate. This is also why the family wants to partner with holistic medicine. Their experience so far has been that specialists focus on one body part and do not take into consideration the other areas of his body that may be significantly damaged due to side effects. Another option that his current doctors have given would be to permanently reroute his bladder to urinate into a bag to take pressure off of the kidneys.
Nicole and Ryan are currently in the process of seeking out a second opinion. Through much research, they have found there are some promising ideas and treatments that could help Jordy. They are partnering with traditional medicine and holistic medicine on this journey to do their best to fuel and care for Jordy’s body. They will be using the money for both, in a way to take care of Jordy’s kidneys and bladder along with the rest of his body to best protect and heal his body for his future.