Losing their “miracle baby” to a virus led this family to get involved with R Baby Foundation.
Rhiannon Fay-Marie was our miracle baby after we had been told that we could never have children – ever. She was born on May 3, 2006, weighed 8 pounds, 10 ounces, and was in picture-perfect health. Rhiannon spent the normal amount of time in the hospital, and at her check-up at four days old, everything was faultless. Rhiannon was exactly one week old on May 11 when she started feeding poorly, became abnormally fussy and stopped sleeping well. Figuring “it was just a baby thing,” we were not too worried, because Rhiannon had a regular pediatric appointment the next day.
The next morning Rhiannon still was not doing well. We called the pediatrician, who said that it was probably typical, that we had a 4 p.m. appointment, and that they could not see Rhiannon any earlier than 4 p.m. By 10 a.m., Rhiannon’s breathing was extremely labored. We called the pediatrician again and said she needed to be seen immediately, so they scheduled an appointment for right after lunch.
Despite babbling and cooing in the car on the way to the doctor’s office, between the lobby and the exam room Rhiannon went into cardiac arrest. Doctors performed CPR; they did first aid; they called 911. So much happened in such a short period that even then we were unsure of what was going on around us.
Rhiannon was transported to the nearest hospital after they stabilized her at the office. In the emergency room, doctors continuously worked on her for several hours, but nobody knew what was wrong. At one point, I remember Rhiannon holding my finger so tightly. I was standing above her, and I remember her looking up at me. She looked at me and it was as if she said “It’s okay, Mommy. Everything will be okay.” I felt then that it was all going to be all right and that Rhiannon recognized me as her mommy. She was holding my finger so tight for such a sick little angel who was going through so much.
Shortly thereafter, however, doctors called Flight for Life for Children’s Hospital in Denver, where still nobody knew what was going on. Finally, a doctor told us Rhiannon might be doing better. However, that night we were asked if we were religious and if we wanted to see a priest. We said yes we were catholic but no, there was no reason for that; she will be fine.
Despite this, though, they called in the priest to baptize Rhiannon. Why, we thought, would she need to be baptized in the NICU if everything is going to be fine? At that point, we realized that something was not right. As if we weren’t scared enough all ready, this put the fear of God into us. This was not the way our daughter was supposed to be baptized. This was not where she was supposed to be.
We were told a little later that she had stabilized, we could lie down to get some rest in a room right next to NICU and that they would come get us if anything changed. About two hours later, doctors pulled us aside and said that they had been working on Rhiannon continuously and that they had done everything that they could do. She was now being kept alive only by life support. Doctors did not know what was going on, but it had taken over Rhiannon’s entire body, and in the short period, all of her organs had shut down.
The priest came again – this time to give Rhiannon her last rites – and at 5 a.m. we were told there was nothing left to do. We had to make the decision to take Rhiannon off the only thing that was keeping her with us. So we took her in our arms as the doctors took her off all of the machines and promised us that she was not in any kind of pain. We held our daughter and rocked her until she passed away silently in our arms.
Even at that time, we did not know what happened. Literally over night Rhiannon had gone from picture-perfect healthy to being gone. We spent a week not knowing anything until finally our pediatrician called and said he wanted to come to the house because he had the test results. He came over that day – the day before her funeral – and said that Rhiannon had contracted an enterovirus, which the doctors at Children’s had only seen a couple of times.
He said there was nothing we could have done; the symptoms Rhiannon had had were common baby symptoms; and if we had come in that morning, he would have told us the same thing. The virus could have come from anybody who visited Rhiannon or she very well could have gotten it from the hospital before we ever left. We struggled to understand the complexity of the situation. As wonderful as our doctor was, he only knew what he had pulled off-line because he had never seen this virus before.
While he was very good about reassuring us that there was nothing we could have done, we were left without anybody to talk to or who knew any additional information. We went to a support group at Children’s Hospital, but we never had the feeling that there was somebody who actually knew what we had gone through. Nobody else had lost a child for the same reason we had.
In April 2007 I was reading a parenting magazine when I came across the full-page ad for R Baby, and I had to look at it twice. They had lost Rebecca at 9 days old – the exact same age as Rhiannon when she passed away. The symptoms were eerily similar, and I felt goose bumps cover my body. It was comforting and a kind of relief. I felt like it was really meant for me to find that ad.
I soon contacted Phyllis Rabinowitz, at which time she invited us to be her guests at the R Baby Foundation fundraiser. It was there that we realized how big this foundation really was and how much we needed to be an active part in it. We needed to be part of this for Rhiannon and for all the children out there whose lives have been lost much too soon.