Erin was born on June 6, 2001. What a beautiful baby! Little did we know how sick she was when she was born. The first night in the nursery she started vomitting. The nurses figured she was lactose intolerant(if only) and put her on soy formula. She continued to vomit when we got home so the dr. had us try remedies for reflux, to no avail. I took her to the doctor 2x a week to have her weighed. Finally at 5 wks her pediatrician did not like the fact that she had lost a full pound from birth weight. Reflux should not cause such weight loss.
He had her admitted to our local hospital to test for reflux. We were scared of that, it sounded pretty invasive. Little did we know.
Initial lab results started to come in and the doctors were very concerned. Something was clearly very wrong with her kidneys but they had no idea what. We were given a choice of where to go, a hospital 40 mins. away or Children's Hospital of Philadelphia(#1 in the country). I don't need to tell you which one we chose. Every now and then I wonder if we would still have her had we chosen convenience. I don't think so. So a priest was called in to do an emergency baptism and we were rushed off to CHOP by ambulance.
The first couple of days there were a living hell. She was seen by a generel medicine doctor and he believed her kidneys had not fully formed. There was nothing we could do but wait for the inevitable(or what seemed so at the time).I prayed to God for anything but that, please, I could handle anything but that. For a brief time I wanted to curl up and die. I say briefly because Mary, gentle mother of Jesus gave me strength to carry on. I wanted the time I had with my baby to be filled with love not sorrow. She deserved that and so much more.
A couple of days later our savior arrived, Dr. Seth. God worked his healing miracle through him.
The dr. had an idea of what might be wrong but needed a kidney biopsy to be sure. My poor baby had been through so much more in her 5 short weeks of life than I had in my 30 yrs. His fears were confirmed. My prayers were answered, I had my anything but. Erin had a rare orphan disease called primary hyperoxaluria. It only affects 1 out of 250,000. The last tme the dr. saw it was in the '70's with catastrophic results. We were given the option not to treat her. It was acceptable for this disease, not to treat. Not acceptable for us though. God had given us this precious angel and we were going to do everything under the sun to keep her. The Doctor explained she would need dialysis 5-7 days a week, 10-12hrs. a day until she was strong enough and a liver and kidney were available. Still I had my anything but, the answer to my prayers. We could do this. This was good. It was better.
After a couple of weeks in the hospital Erin's kidneys slowly began to improve. Drs. did not want to give us any false hope what so ever. We were sent home to love our baby and grow her big(for her impending transplants). The loving was easy, the growing big took quite some work. We also had to wake her every three hours to feed her so her kidneys would flush. Wanting to hit that snooze button but knowing it could make the difference between life and death for your child who is so dependent on you for everything was tough.
Erin improved more and more as the months passed. Finally to our surprise and the doctors, her kidneys had full function. It was becoming apparent as long as we got the liver quick enough she would not need a kidney transplant too. Yeah!
She had a few hospitalizations in between for stuff healthy children could fight off. Each one affected her kidneys and each time they bounced right back, through the grace of God and her brilliant kidney doctor.
Through all of this Erin continued to be her bright, sunny self. Always smiling and never complaining. Every time she smiled I would cry. Would she make it? The pit was in my stomach morning, noon and night. When would the call come?
After the disease finished with the kidneys it would travel to the rest of her organs. Every time I looked at her I would wonder how far it was going.
Erin recieved her liver transplant on April 14, 2002. We made it! Her kidneys were still in good shape. She recieved her gift of life from a 2 year old child, because some very special people made a courageous, altruistic decision in their time of grief.
Don't take your organs to heaven. Heaven knows we need them here.