Harrison Steiner With-Seidelin Schaufel was born July 12th,2001. He weighed in at 4pounds 8 ounces which was a good size according to the NICU nurses. For a boy with such a big name, he was really small. He was born two months premature by scheduled cesarean because he was diagnosed with hydronephrosis--fluid in the kidneys. The OBGyn discovered there was a problem during a routine sonogram. Once it was confirmed, we were sent to UCSF for testing. We saw the radiologist who thought his kidneys were probably in good shape, but the pressure was not good for the proper development of the kidneys. Also, the amniotic fluid was not circulating well which can harm other organ development. The most likely culprit was posterior urethral valves, or small valves in the urethra which were reversed blocking the flow of fluid instead of controlling it. Apparently, this occurs in many boy babies while in utero, but goes undetected as it corrects itself. Unfortunately, Harrison's case was extreme and needed to be surgically corrected. We were hopeful that he would be fine. What we didn't know was that he would be too small for such a procedure when he was born. Harrison went straight to the critical care NICU. He had wires and tubes, and the first week was impossibly difficult. He had a surgery when he was two weeks old to open his bladder to the surface to relieve the pressure. He spent five weeks in the NICU, and I went every day while my husband Steiner and our families helped to take care of our 20 month- old son Hunter. This is where we met Dr.'s Brakeman, Mathias, Portale and Nguyen. Dr. Brakeman and Dr. Portale gave us the news that Harrison had ten percent kidney function, and it would only get worse. Eventually, he would need dialysis and a transplant. Steiner and I were in shock--for quite a while. Dr. Brakeman said that we would become like family--so true.
Our world was turned upside down. We live an hour away from UCSF and we felt very lucky as we met families who had traveled from around the world to come to UCSF. Harrison was released after five weeks and one surgery. Hunter had only seen his younger brother a few times while he was in the hospital, so he was thrilled when he came home. Steiner's parents and my mother and our friends helped us live through this long stretch of uncertainty, illnesses, set-backs, emergency room runs in the middle of the night, helicopter transport and thirteen surgeries. All the while, Harrison was strong and somehow managed to laugh with an infectious laugh and his smile lit up the room. We are so incredibly grateful to all who helped and supported us.
When Harrison was six months old, just after Christmas 2002, we got a call from Dr. Brakeman saying that Harrison needed to start dialysis. That was the lowest point. He wasn't growing. He had to take awful medications by mouth. He had a surgery to place the dialysis tube, and Steiner and I had to learn to perform peritoneal dialysis at home. We had one-on one training from our nurse practitioner Lena. She was amazing at getting us up and running. We did the dialysis at home in a sterile environment, and, amazingly, he never got peritonitis. The dialysis took a long time as it had to be done in intervals all during the day. This made it really difficult to raise a two-year old.
Both boys were unbelievably patient and understanding. Hunter helped sometimes, and it allowed him to sympathize with Harrison's situation. He was very understanding when Harrison had a bad day. Yet we still tried to make things pretty normal even when the dialysis took 18 hours of our day--one hour fluid exchange, one hour rest--nine times!
We still managed to go to Marine World or the park. Harrison's greatest joy was when he could ride a horse. If he was having a bad day, Spirit the pony always made it better. Life became more manageable when we got the dialysis machine from Baxter. This freed up so much time during the day as he could receive the treatment while he slept at night, and it performed the exchanges. It wasn't perfect, as no one slept much through all of the beeping and cycling, but at least we weren't tied to home all day. With that came hernia problems. Harrison had giant hernias from the fluid. He was one of the smallest kids to ever go on the peritoneal dialysis machine, so the volumes were still being tested. After his second hernia surgery and a G-tube feeding port being placed, he needed to go on hemodialysis. That, too, was a difficult stage. We had to come to UCSF Dialysis unit three times a week for four hours a session. Harrison was a star. He handled it amazingly. Hunter and Steiner were so supportive as were the family and friends. Some infections followed. Tube feedings continued through the days and nights, but it made taking those awful medications much easier. Harrison continued to grow--slowly. He needed help with developmental issues that were only a result of his kidney and dialysis fluid issue. Harrison didn't crawl or walk most likely because he didn't have the strength or energy, and there was fluid in his tummy.We went to physical therapy twice a week and speech therapy twice a week. Because Harrison stopped eating right after his dialysis began, he did not develop certain muscles that are related to eating and swallowing. Kelly and Melinda at Northbay were amazing. Harrison progressed slowly.
Finally, at twenty months and twenty-two pounds, Harrison needed a new kidney. March 27th,2003. Harrison received my kidney, and it started to work immediately. Those were the first words I heard, "It's working." Dr. Peter Stock did Harrison's surgery. Harrison's kidneys were removed as they were very damaged and his ureters posed a threat of infection to the new kidney. Amazingly, Harrison was released from the hospital a week later. A miracle occurred the night he came home-Harrison was hungry for the first time in months. He ate pizza while we all stared in awe. Two months later he was walking like nothing ever happened. We are eternally grateful to all of those people helped to get us to that place.
Five years later, and we always say our thanks and knock wood, Harrison is a thriving seven year old. He excels in school. He still loves to ride horses and he even earned his yellow belt in karate. Dr. Brakeman, Marilyn McEnhill and Janet Jaskula, his nurse practitioners, Kelly, his nutritionist, and his pediatrician, Dr. Morgese: all of them work together to follow Harrison's progress. Our family is so fortunate to have this dream team along with UCSF to help Harrison thrive and reach his goals.This last summer, Harrison had his fourteenth surgery to remove his last tube--his feeding G tube. It was there for medications and for emergencies. This was a huge milestone for Harrison as has learned to take all 14 doses by mouth every day. He will always have to take medicine, but he has the ability to do it himself.
These years have been a journey of hope and trust. We have kept hope in our hearts that Harrison would have a good and normal life. He is having a great life. He is a magnet for joy--people like to be around him. Hunter has grown into a sensitive, caring and amazing boy--a wonderful big brother! Steiner and I placed our trust in some amazing people, and we are deeply grateful for all of their efforts and knowledge.
We started our film about Harrison's experience soon after we learned that he would be able to receive the transplant. This came about as the result of a meeting that I had with another mother of a baby with kidney disease. Dr. Brakeman asked if I would talk with her about our experience. She was facing the decision of whether to place her son on dialysis as we had done. The moment she met Harrison and saw how great he was-this was two weeks before the transplant! She said that she was so inspired and agreed to go forward. This gave me the idea that we should share this inspiration with other families in similar situations. Our friend who happens to be a film editor and Harrison's godfather agreed to document the whole thing from his life on dialysis through the transplant and his progress afterwards. Our goal is to encourage other families with kids in this situation.The message we would like to share is: never give up, keep going, get the best help and gather friends and family for support. Secondly, the film might be useful as a means to encourage organ donation. Thirdly, this might be helpful for professionals to see what life is like on dialysis and to see both surgeries in their entirety. He filmed both surgeries which I still haven't seen. We hope to get support to finish editing and produce the film.
We are so thankful, and we would like to give back in the form of organizing fundraisers. Last summer, we received a call about the summer camp for kids with kidney disease was in danger of being cancelled. Without much time to get something together, we organized a personal walk-a-thon. Hunter, Harrison and I walked the Golden Gate Bridge. We emailed our friends that we were celebrating our fifth anniversary of the transplant, and would they donate to the Kidney Foundation. At last count, I think we raised about $3000.00--it wasn't too bad for short notice. We are currently planning a fundraiser for the end of July 2009.
Today, we look at our family at our two strong boys , and we are thankful.
Annelise Schaufel 12/03/08
