Meet Jackson! Or, as we like to call him, Jax. A tough name for a tough little dude. Our 20-week ultrasound started out like his sisters’. We got to see his hands, feet, head and all of the important parts! But, as a mom, you get a sense when something isn’t right. As I sat in the OB’s exam room, she explained that Jax’s bladder, kidneys and ureters were all enlarged. She referred me to a Maternal Fetal Medicine Doctor and suggested to not Google the condition. Noted. I didn’t.
The next day we met with the MFM and a Genetics Counselor. They took us into a room and told us that Jackson had LUTO, a Lower Urinary Tract Obstruction. This obstruction prevented his urine from coming out, which then backed up into his ureters and kidneys damaging them. We talked about any possible family history of kidney issues and came up blank. Further genetic testing did not result in any definitive causes, either. It was purely nature.
From then on, I was seen weekly by the MFM and my regular OB. I had an ultrasound every week and as the weeks went on, my amniotic fluid began to drop. I’m not sure how I never knew this, but the baby’s urine is what makes up the amniotic fluid and if Jax’s blockage was preventing him from urinating, there goes the fluid. By 28 weeks, I had about 2 cm of amniotic fluid and we were referred to Cincinnati Children’s Hospital (where the closest fetal surgeon resides) for possible intervention.
In Cincinnati, we had an ultrasound, fetal MRI, and echocardiogram done. I remember packing my suitcase and not really knowing when I would be back home. I put a few things in for Jax just in case. After all of those tests, we met with a fetal care team and honestly, we left that meeting feeling devastated and hopeless and really unsure if Jax was going to survive the rest of the pregnancy and if he did, would he survive once he was born? My appointments continued and then the daily NST’s began. An NST is a non-stress test to check the baby’s heartbeat and make sure he wasn’t having any decelerations, or temporary drops in the fetal heart rate.
Fast forward to 36 weeks + 3 days and I was at the MFM for my ultrasound and NST and after the NST, the doctor came in and said, “This isn’t normal for your baby, we’re delivering tonight.”
Jackson was born at 8:51 p.m. that night. They held him up for me to see for about 1 second and then he was whisked away to the NICU. Jax had a rough first few days of life, but he is truly a miracle! After 71 days in the NICU, we brought him home to finally meet his big sisters and grandparents! Jax started peritoneal dialysis about 2 months after coming home and has been on it ever since. We are truly so lucky that Jax is a thriving little guy, thankful that he has no other health issues along with his kidney disease and god bless his feeding tube because that is what is helping him grow!
We decided to partner with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Jax! COTA funds are available for a lifetime, so COTA will support Jax for this transplant, as well as a future transplant or kidney disease related medical expenses in his future. Kidney transplants are not expected to last a lifetime, so unfortunately Jax will face this again later in life.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.