At 20 weeks of our pregnancy we found out that I had very little amniotic fluid and Emma had only one kidney that was enlarged with multiple cysts and was most likely not functioning. In utero this is almost always fatal as amniotic fluid is used to develop the fetus’ lungs. We were devastated. We were referred to Cincinnati Children’s Hospital for a research study they were doing for babies like Emma. She was diagnosed with multi-cystic dysplastic kidney disease (MCDK).  Basically, Emma had one kidney that did not function at all and was full of large cysts.  Her father and I met with a group of specialists at Cincinnati and they gave us 3 options for Emma (do nothing and she would pass, abort her, or try amnio-infusions with their research group which was still not a guarantee that she would survive).  We ended up trying the amnio-infusions.  Every week we would travel to Cincinnati to have a large needle introduced into my uterus and saline was given to Emma around her in hopes she would breathe the fluid in and help develop her lungs for a successful delivery. These procedures were very risky and could have sent me into pre-term labor, but we tried them anyways because we had hope for our baby girl to live. At 29 weeks I had a placenta abruption from an amnio-infusion and was in the hospital for a week and we had to stop the amnio-infusions. I had to relocate to Cincinnati at that point to ensure that if Emma came early she was by the best doctors and surgeons to intervene with her care. At 33 weeks I went into pre-term labor at the Ronald McDonald House and Emma was born on 3/9/19 at 8:08am 7 weeks early.  She was transferred from UC to Cincinnati Children’s NICU for the fight of her life. Her lungs were underdeveloped and she was intubated. She was also in kidney failure as she had no functioning Kidney.  She had surgery at just 3 days old to have catheters placed to start dialysis, as dialysis was then the only way to keep Emma alive with no functioning kidneys along with her being on a ventilator.  On 3/28/19 Emma had a pulmonary hemorrhage and coded twice in the NICU. She was re-intubated at that time and was given a grave prognosis. Family and friends rallied together around Emma and her family and prayed and Emma prevailed and was successfully able to be weened off of the ventilator in April 2019.  Emma has been on dialysis since day 5 of her life to keep her alive with no functioning kidney and she now breathes on her own! At 2 months old Emma had a gtube surgically put in to allow her to eat and grow.  The majority of end stage renal babies do not eat by mouth and have issues with eating due to them being intubated most of their early life and the pressure of dialysis on their tummy is uncomfortable and she also has reflux very badly.  Emma spent the first 127 days of her life at Cincinnati Children’s fighting for her life and she won that battle and was discharged home on 7/16/19! She has been re-hospitalized once for a virus, as Emma is very susceptible to germs and her immune system is compromised. She lives at home now with her mother and father on dialysis for 12 hours at night and is fed by her gtube.  Her mother quit her job to take care of Emma, as she is very medically complex and must have 24/7 care due to her diagnosis.  Emma will need a kidney transplant and we are hoping this takes place by the end of 2020.  In order for her to be on the transplant list she must continue to grow.  Her current bad kidney is larger than an adult kidney and will most likely be surgically removed in March of 2020. This is a major surgery for Emma but her doctors feel this is the best thing for Emma as it is causing dialysis issues and vomiting due to the pressure on her other organs.  Emma is a pure fighter and is the happiest baby you’ll ever meet. She loves to smile, cuddle and gabs away. We cannot wait until she no longer has to be on dialysis and can eat by mouth once she gets her new kidney. This is the hardest journey of our life but one so worth every minute of everything. Her odds were low and she has overcome so many hurdles at her young age. She has so much love and support around her and God is on her side. She has changed the lives of everyone she comes into contact with. She is an angel sent from God to show us all what miracles are.

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.

Updates: In 2020 Emma had her one bad kidney removed beause it was causing her problems.  She also had her parathyroid glands removed due to bone and health issues caused by her kidney disease.  She was approved to be worked up for a kidney transplant and was approved to be transplanted once a viable donor was found.  In 2021 her mother is being tested and evaluated to hopefully be her living donor in the summer of 2021.