Family Story - Frankie Milley

Frankie MilleyFrankie Milley is the mother of an only child, Ryan Milley, who died from a vaccine-preventable form of meningitis when he was a teenager. Frankie Milley is the founder and executive national director of a non profit organization called Meningitis Angels.


"On Father's Day, Ryan became ill with a fever and an earache. Through the evening, I would give him Tylenol and ibuprofen, but his fever never really came down, and later on, I would find out that that was a really definite sign of bacterial meningitis – unrelenting fever. Through the night, we watched over him, much to his dismay because, at 18, most boys don't want their mothers hovering over them. In early morning Ryan got up, and he was still just not feeling well, still running a temp. I called our family doctor and made an appointment for 10:00.


Ryan came into my bedroom about 8:00 that morning, shortly after I hung up from the doctor and, in the dim light, I could see something that appeared to be spots and some sort of a rash on his body. I turned on the light, and I could see his blood vessels rupturing under his skin. He had places on his body that looked like hickeys, that looked like bruises, that looked like strawberry patches, but they were purple.


Because I'm trained in EMS, I realized Ryan had bacterial meningitis. I called my doctor back and told him, I think Ryan has meningitis, and he said get him here as soon as possible. On the way to the hospital, I kept taking his pulse, and he was kind of fading in and out on me. He was talking out of his head a little bit. He would just kind of just be really still all of a sudden, and I had my hand on his pulse, and his pulse rate was over 185 at that point.


We got to the hospital and got Ryan on a gurney, and Ryan looked at me and he said, "Mom, am I going to be okay?" I never answered because I really knew that Ryan probably wasn't going to be okay at that point. They put him in a treatment room, and I was right there with him the whole time. My husband went on the other side of Ryan's gurney. And Ryan told his dad he was cold, and Bob kind of was rubbing his feet as they were getting warming blankets for Ryan. Looking back, I think I must have been in shock. It was like I was there, but I wasn't. I was just watching it all through a window. It was just a really strange thing. They did four spinal taps on Ryan before they could really get anything substantial, and the spinal fluid was just like a bloody fluid. It wasn't milky. Ryan had meningococcemia, so he had not yet developed full-blown meningitis. He just had sepsis. He began to vomit blood, and the nurse told him. She said, "Ryan, honey, we're going to put a stomach tube in. You're vomiting." And he looked at her, and he said, "I'm sorry." And she started crying. She said, "My God. What a good boy you have. He's apologizing to me. I can't believe this."


They put a Foley catheter in, and there was pure blood coming from Ryan's kidneys, bladder. We began to see bloody fluid coming from his ears, his eyes, his nose, his mouth, and he was turning purple, and they were giving him massive amounts of antibiotic. In fact, the nurse looked at me and she said, "God, this is a lot of antibiotic." And I said, "I know." But, you know, they were fighting for Ryan's life. Ryan was dying, and they were doing everything they could to save him.


About two hours after we got to the ER, Ryan's heart stopped beating, and Bob was trapped between the gurney and the respirator and the wall, and I was trying to get to him to get him out because I didn't want him to see the advanced life support, and CPR that they would be starting on Ryan, and as I was going toward Bob to get him out, he was telling Ryan, "Daddy loves you, baby boy. Daddy loves you, baby boy," reaching for Ryan. Over and over, he kept telling Ryan, "Daddy loves you, baby boy."


And on its own, Ryan's heart started beating. Everybody in there just kind of stepped back and took a deep breath, and Ryan rolled his head in the direction of his dad, and he said, "I know." That was the last thing Ryan would say. His heart stopped again, and they gave us the cardiograms to prove that because they were just couldn't believe it. They called a Code Blue to the ER. We got outside the door, and I shut the door behind us, and one of the nurses asked if we wanted to go to the next room and wait. And I said no. I wanted to hear. I want to hear when he dies. I want to hear when he leaves.


So they brought a chair, and I sat down and put my head against the door, and Bob stood behind me with his hands on my shoulders. And he began to pray out loud. And the hospital chaplain came, and everybody came from treatment rooms, and the ER staff, and they all just stood there. They all just stood there in prayer and shock. And a nurse came from ICU, and she said, "My name is Debbie," and she said, "I'm going to be Ryan's ICU nurse." And I said, "Ryan is not going to go to ICU. Ryan is going to go home today." And she knelt down at my feet, and she started to pray, and I heard the ER doctor that was working on Ryan say, "Dear God, please help me save this child. Please don't let him die." And then a few minutes later I heard, time of death 10:53 a.m.


They came out of Ryan's room, and he said – the doctor said to me, "I'm so sorry. I tried to do everything I could." And I said "Thank you," and he started crying. He said, "My God, nobody has ever thanked me when their child died."


He was a perfectly healthy 18-year-old male, and he died. He never had the classic signs of meningitis. We would find out later with meningococcemia, they don't always have the stiff neck and the headache because it's not in the meninges at that point. It's in the bloodstream. The bacteria enter the bloodstream, and when that happens, there is less than 48 hours, they believe, from the time of exposure to death or debilitation. So there's no time for them to even develop the classic signs, and that's why it's so important that people understand that sometimes when kids get meningococcal, that they're not always going to develop that stiff neck or that headache. They may have other signs and symptoms that appear long before that that are life-threatening. Ryan went from being totally healthy to having blood coming from every orifice of his body in less than 14 hours.


I found out there was a vaccine that could have prevented Ryan's death, and no one had ever told me about it. I knew about meningitis. I knew that it could kill you. I didn't know that it could debilitate you like I do now. I didn't know there was a vaccine to prevent it, but yet our military had been getting it for over 30 years, but it was never offered to our children. When Ryan died, I grieved. Then I got angry. I felt Ryan was failed by the pharmaceutical company that had developed the vaccine and never really done enough education on the disease and the vaccine to prevent it. I was angry with the medical profession that didn't worry about the fact that we needed to be immunizing kids for it. I was really angry. Ryan did not have to die. He should not have died."

To hear the full interview with Frankie Milley, visit Sound Advice.

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