Five-year-old Riley is fighting for his life and his mom and stepdad are asking for help to keep the family going.
Riley’s stepdad, Robert Montfort is a Maryland native. He met Riley’s mom, Dawn Drehoff many years ago when her father was stationed in St. Mary’s County. The two later reunited and combined their five children into one family.
Riley, the youngest of the siblings, had his first heart surgery when he was just 11 days old. He was born Hypoplastic Left Heart Syndrome. The left side of his heart did not form properly. His mom said additional surgeries followed again at 5 months and then at 3 years old.
Dawn Drehoff said, “.All the repair surgeries are to fix the plumbing, so to speak, inside of the heart to work off of the right side of the heart.”
Heart Failure At 4 Years Old
Many children with the condition require a heart transplant, though most are able to postpone the procedure until their teens. However, Riley’s conditioned worsened. “At the end of April, he was admitted to the hospital for heart failure. Just 5 days after being admitted, he was listed for heart transplant and at the time I was told he was too sick to go home before getting the transplant.”
Tests showed Riley had a high level of antibodies, which could cause his body to reject a transplant. His mom said doctors began a radical chemo treatment to help stop the production of antibodies. He was put on more medications and sent home. Then things got worse. “Exactly two months went by before he was admitted again. But this time was different. He completely crashed, with other organs failing as well. They told me later had I been any later getting him there (we went immediately as soon as the cardiologist said to go) he would not have made it.”
8 Weeks Of Complications
Doctors implanted a Berlin Heart, a heart pump that maintains blood flow in babies and young children in serous heart failure, placed him on kidney dialysis, and began yet another round of chemo. But things haven’t been easy. Dawn said, “Each week since being in the hospital (this is week 8) he has suffered an issue. The week after his Berlin Heart was placed, his lung was punctured while placing new dialysis lines. The following week he had formed a hematoma in his lung from the puncture, and had to be taken back to surgery to have an evacuation and wash out of the hematoma. The week after that he had GI bleeds, and the tests to go with that”
Riley’s 5th birthday was last week. Dawn had hoped his stepfather and siblings might be able to visit him in the hospital. Unfortunately, complications set in again. “The morning of his birthday, he had a fever and was very lethargic. Throughout the day, by around 4pm, his fevers had reached 107°, and he was unresponsive. A CT would show he had 2 brain bleeds, his GI was starting to bleed again, his fevers were the highest most of us had seen, and then he coded as much as you can on a VAD and had to be shocked twice with AED.”
Tough As Can Be
But the little boy is a fighter and his mother said he’d doing better. “He is still hanging in there tough as can be. We are hoping to soon celebrate his 5th birthday with him and a small party at the hospital.”
Dawn said she’s unable to work because she must stay by Riley’s side. “On a daily basis, the following departments come to see Reilly, as they have a hand in his care in the PCICU: Hematology, Neurology, Immunology/Rheumatology, Infectious Disease, Nephrology, Transplant team, Cardiology, Palliative Care, Physical therapy, Occupational Therapy, Child Life services, Gastroenterology, and his Heart surgeon, Dr. Mark Bleiweis visits several times a week.”
So far, his stepfather and siblings haven’t been able to visit him in the hospital. Dawn said the ordeal has put them in a financial bind. “We are doing our best with house bills, gas going back and forth (40 mins away) and food daily.” To check out the GoFundMe for Riley’s family, click here.