Leila’s kidney journey started long before she was born. At about 26 weeks gestation while still in the womb, Jenn went in for a growth check ultrasound. At that visit they found that Leila did not have any amniotic fluid. Amniotic fluid is produced by the baby’s kidneys. Previously she had always had plenty of fluid, but it was always at the low end of normal. This finding led to further imaging that showed that Leila had cysts on both her kidneys and likely had a disorder known as Multicystic Dysplastic Kidneys. When only one kidney is affected, most children can go on to have a normal life, but when both kidneys are affected, such as in Leila’s case, the prognosis is grim. While in the womb, mom’s kidneys did the job of Leila’s kidneys, so she was able to grow and continue to develop. But without amniotic fluid there was concern that her lungs would not fully develop. Without good lung development it was unlikely any intervention to help her kidneys would be possible.
At that time we elected to let Leila grow and monitor her closely. At 31 weeks gestation she had another growth scan and her doctors felt that she would have a chance at life if she were born at that point. They wanted her to be big enough to be able to have a peritoneal dialysis catheter placed to do the work of her functionless kidneys. At that point Jason and Jenn elected to move forward with amnioinfusions, a procedure that adds fluid to the amniotic sac to allow for better lung development. Unfortunately, Jenn’s water broke that same night she had her first infusion. Jenn went into labor that night at 31 weeks gestation. Thankfully her medical team was able to stop labor and keep little Leila cooking for a few more weeks. Jenn spent the next 3 weeks in the hospital under constant monitoring. Leila declared herself a fighter and handled everything so well!
At 34 weeks gestation Jenn had a scheduled c-section and Leila was born! She required immediate respiratory support. With Dad by her side, she was given medication to help her breathe and a breathing tube was placed. Her response to the efforts were not great and she was requiring the highest level of support. Mom and Dad were told to prepare for the worst and Leila was started on comfort cares. But Leila is a fighter and God is a miracle worker. On day 2 of life Leila pulled out her breathing tube not once but twice! It was as if she was telling us she didn’t need it! Over the next two days her respiratory status stabilized and she even made a little urine! Mom and Dad insisted on the NICU re-evaluating Leila, and after an X-ray and a blood gas result came back encouraging, they reached out to the nephrology team at Children’s Nebraska who felt she was stable enough to move forward with dialysis and catheter placement!
At 5 days old Leila was transferred to Children’s Nebraska and had surgery to place her lifesaving dialysis catheter. 2 weeks later she started peritoneal dialysis. It was a very difficult time for Leila with lots of issues with electrolyte and fluid balance and then some additional issues that were identified. Through it all Leila continued to show us her fighting spirit as she overcame each obstacle thrown at her. For several weeks Leila’s lung development seemed to be an issue of the past. She was weening off of oxygen day by day, but then she came down with a respiratory virus. She had to be intubated and needed ventilator support. After that illness Leila’s lungs never seemed to recover and she was intubated more often than not. At about 3 months old Jenn and Jason made the difficult decision to have a tracheostomy placed so that Leila could have a more stable airway long term.
After her trach was placed Leila seemed to take off! She was growing and doing more developmentally. Eventually she was transferred to a step-down unit in preparation of going home! After almost 7 months in the hospital Leila was able to come home! Since then, Leila has been on peritoneal dialysis every night to do the work of her kidneys. Her lungs have developed well, and she no longer is dependent on the ventilator to breathe for her. She has thrived at home and has grown into a sassy and funny 2-year-old. She is loved by many.
This spring she was approved for a kidney transplant, and about 6 weeks later we found a match! We are blessed to have a very close friend who matched with Leila, and is selflessly giving one of her kidneys so Leila can live. Transplant is scheduled for September 12th. We are anticipating that Leila will be in the hospital for about 2 weeks after the surgery. Then we are required to stay near the transplant center until she is 8 weeks post-transplant. For those 8 weeks we will be relocating our family from Grand Island to Omaha. During that time Jenn will be Leila’s primary caregiver and will not able to work. Jason plans to be off of work for a few weeks and then is hoping he can work remotely from Omaha. This time off of work for both parents will cause a financial burden for the Soria Family. This is why we are partnering with COTA to help raise funds for transplant-related expenses. Thank you for joining us in supporting COTA in honor of Leila’s Kidney Journey.
We also have a Facebook page that we use to share updates on Leila’s journey. Please feel free to join our community at “Leila’s Kidney Journey” on Facebook.
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.