Hunter’s Story

Prior to September 30, 2003 Hunter Burke was a healthy baby boy. We were planning to celebrate his first birthday on November 1, 2003 looking forward to all the wonderful milestones parents envision. As we await his baby brother’s arrival this June, Hunter has grown into an adorable, loving little boy with a positive personality and a lot of energy but he still faces an uncertain future.

On the night of Sept. 30th, we took Hunter into the nearby emergency room of Portland’s Maine Medical Center two days after his pediatrician thought Hunter had a mild stomach virus. He had vomited again that night, and was lethargic and seemingly weak, but when Hunter looked blankly and unresponsively at us for a brief interval of about 20 minutes, we knew something was terribly wrong. Everyone at the hospital E.R. was wonderful, but they turned us over to the chief of the E.R. the moment Hunter’s alarming results returned from a wide array of blood chemistry tests. Hunter’s body was destroying his own red blood cells and many of the labs results came back marked critically high or low. Hemolytic uremic syndrome was immediately suspected although Hunter’s symptoms did not include bloody diarrhea, something connected with the more benign typical HUS.

Starting with transfers of packed red blood cells, Hunter’s pediatric nephrologist did try a transfusion of fresh frozen plasma. Hunter’s status only worsened, so a vascular catheter (central line) was surgically implanted 10/13 so that he could receive donor blood plasma components in the plasma exchange called plasmapheresis. During surgery, a kidney biopsy was taken to verify the diagnosis of atypical HUS and to check on damage done in regard to the small and large vessel involvement in the kidneys.

Hunter was hospitalized in the Barbara Bush Children’s unit of Portland’s Maine Medical Center from Sept. 30th until December 23rd 2003, including two stays in Pediatric ICU where we almost lost him. During one of his two stays in ICU, Hunter was on a ventilator for eight days in a chemically-induced coma, eyes closed but still attempting to fight the morphine and paralytic drugs. Seeing Hunter lying in ICU with his arms and legs strapped-down, his eyes never opening for those 8 days, was a nightmare we will never forget and hope never happens again. On Saturday 11/8 one week after his first birthday, Hunter had a total of 1.3 liters of fluid dialyzed off his tiny body that night and the next morning. We were given a 6 hour window to try to save his life- jeopardizing him by attempting dialysis as Hunter clung to life, but sentencing him to a sure death if we didn’t pull the excess fluid from around his heart and lungs, and lower his critically high blood pressures.

At its worst, Hunter’s condition caused his blood chemistry levels to show an LDH of 1131, a creatinine level of 3.8, and a BUN of 63 - levels that are now in the more normal range of 283, .4, and 17 respectively. We had plasmapheresis daily for a couple of months, then went to alternating days with hopes of tapering off. A gastric feeding tube was implanted on 12/19 and Hunter currently receives about 60% of his nutrients through his night feeds. Currently he goes back to the hospital for a half-day 2 to 3 times a week for plasmapheresis. We are down to only one blood pressure medication - Enalapril, an ACE inhibitor - and Prevacid to help tolerate the feeds and treatments. We have had a few setbacks recently to include a 5 day stay at the hospital where, triggered by a common rotavirus, Hunter’s temperature soared in excess of 104, receiving ice baths to moderate his temperature as we prayed there was no neurological damage.

Having a child with AHUS is like having a sword dangling over his head, never knowing when the sword might fall again to do irreparable damage or even be fatal to your child. A common cold could trigger a life threatening episode of HUS. Regardless of being haunted by the possibility of more HUS attacks we are hopeful that his treatments can be reduced to once a week so Hunter can be more accurately tested for his particular HUS condition. We live on the coast of Maine and there is a phrase by Harriet Beecher Stowe we feel is very appropriate to our circumstances. “Never give up, for that is just the place and time the tide will turn.” The tide will turn in Hunter’s favor and for all children with AHUS.

We are grateful for the wonderful people at Maine Medical Center who treat Hunter and are so thankful for all the support we’ve received from neighbors, friends, and family. We appreciate their kindness and prayers for Hunter’s health, and hope you personally will consider lending financial support for a cure for AHUS.

Brad, Linda and Hunter Burke

Back to The Children's Stories