NOTE FROM THE MACS STAFF

Marissa's story has NOT been updated yet since she passed away on May 22nd, 2007. We will update the end of her story as soon as we receive more information from her family.

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Marissa's Story
written by mom Jennifer

My husband Charles and I had always wanted a child. We had endured the pain of 2 second trimester miscarriages and began to wonder if it would ever happen for us. Needless to say, we were elated when we found out that we were expecting a baby girl. Due to my "high-risk status" (hx of miscarriages, gestational diabetes, single umbilical artery), I was followed closely by my OB doctor. At 38 weeks, my blood pressure began a steady rise, and the decision was made to induce my labor. At 8:07 PM on January 7, 2002, after 12+ hours of labor and "failure to progress", our beautiful 10 lb., 1 oz. baby girl was delivered via C-Section. I cannot begin to put into words the joy she has brought into our lives!

We had been told prior to her birth that our baby could have blood sugar problems with her levels dropping to a dangerous level upon delivery. Marissa was immediately taken from the delivery area where attempts to feed her and start an IV were not successful. We were then told that she needed to be transferred to a Special Care Nursery (NICU) in Delaware. They wheeled her in to my room so I could catch a quick glimpse of her again before she was taken to the other hospital. I remained in the Maryland hospital until lunch time on the 9th when I convinced my doctors that I was well enough for discharge. I wanted to see and actually hold our baby girl!

Marissa's blood sugar issue resolved rather quickly, however on her third day of life, she spiked a high fever. After many tests it was determined that she had an urinary tract infection, and she was treated with IV antibiotics. While in the NICU, Marissa was seen by Dr. Figueroa, a Pediatric Urologist who recommended that Marissa have a cystoscopy to determine possible causes for the infection. Our little girl was then taken to the AI duPont Hospital for Children in Wilmington, Delaware and had this test under general anesthesia at only 9 days old.

This was the first of many procedures, as we learned that Marissa had severe abnormalities in her urinary tract system, including two tiny bladders, two urethras, abnormal kidneys which were poorly formed and had multiple cysts. Marissa endured many corrective urological surgeries (bilateral ureteral reimplantation at 11 months old; multiple bladder augmentation surgeries; Mitrofanoff procedure, etc.) to minimize UTIs and to prolong the life of her kidneys.

Marissa spent many days/weeks in the hospital recovering from infections, surgeries, etc. Any illness which involved diarrhea or vomiting would put her in crisis and require hospitalization to prevent dehydration. She also developed a blockage which required a nephrostomy tube and meant she wore an external urine drainage bag for several weeks.

Marissa has been such a strong happy child through all of this...so easy-going and accepting of all of her medical issues. She and I made many friends with nurses and other staff and patients on 3CSouth at AI duPont. Her brother Justin was born the morning after we left the hospital after a two week stay.

In September of 2005, we made the decision to move to Virginia to be closer to my parents who have been so supportive of Marissa and our family. (On many occasions, they dropped everything and drove 6 hours to be with us at the hospital and to spend time with Marissa). This move was such a huge leap of faith for us. We had been so happy with the care from the Urologists and Nephrologists at AI duPont, and knew it would be a challenge to find a whole new team of physicians.

Immediately upon relocating to Virginia, we scheduled an appointment at the UVA Children's Hospital. Marissa had been followed closely by the team of nephrologists there. We knew that "one day" Marissa would need a kidney transplant, however we had hoped that it would be later in life. Marissa's creatine levels and BUN continued to rise, and her kidney function dropped below 10% of normal. We were then able to complete all of the tests necessary to place her on the National Waiting List. Marissa was placed on the list in April 2006, and we have been told that most children her age/prognosis will get their kidney within a year.

Our hope was to avoid dialysis completely and go straight to transplant. We struggled with the concept that Marissa's health had declined to the point that she may not be able to live without dialysis. She would go days without eating, and wanted to sleep all of the time due to the kidney failure. Marissa had surgery October 3, 2006 to have a PD Catheter inserted, a Feeding tube inserted, and a port-a-cath placed to allow for blood draws/IVs as needed. She began to have 10 hours of dialysis at home each night as she would sleep. Initially the dialysis didn't work very well, and she required another surgery to remove omentum (fatty tissue) which was clogging the catheter. We are so thankful that this type of dialysis is now working. Hemodialysis would have required our family to travel 5 hours roundtrip 3 days per week, and would have required Marissa to undergo dialysis in the clinic at UVA.

Marissa is doing pretty well now. Dialysis and g-tube feedings have become a "normal part of our bedtime routine" for now. She is accepting (and even proud) of her "tubies" which are a temporary addition to her little body. She is such a trooper. She understands that she's getting a "new kidney" and will have to have a "big surgery" when the doctors find a "new kidney" for her.

We're just taking one day at a time and hope and pray that a type O kidney becomes available for her soon. Marissa is a true testimony to those who know her. We know God has great plans for her future!