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Brian Joseph's story   — Maria and Ray

A Story Of Courage And Strength After A Preventable Tragedy.

I have read many messages about GBS and so far all of them have been survivor stories, thank God. I am very happy for all of you who have had to deal with it and still have your healthy babies to hold. You are truly blessed - appreciate every moment you have with your child. We do not have our child anymore. Brian was born healthy and beautiful on August 4, 1998. He had nothing wrong with him. He was growing and thriving. He was our third child. We have a four year old daughter, Rachael and a three year old son Michael who fell in love with their baby brother. 25 days after his birth, he suffered a seizure right in front of my husband and me. We called 911 and rushed him to the hospital by ambulance. He was taken to our local hospital; within minutes, they administered the antibiotic and when he was stabilized, they transported him to Children's Hospital in Philadelphia. He grew progressively worse in a short amount of time. They weren't even completely sure what was wrong with him, but they guessed correctly. He died at 10:04 a.m. after 10 hours from the initial onset of the infection. The next day, after all the blood work came back, we found out it was GBS. I was tested when I was pregnant for it. My test result was negative. I never asked what I was being tested for, either. I trusted my doctors. My other children were perfectly healthy from birth to present. I had no need to worry. My doctors are known for being very thorough. There is so much more to our story, but I am to tired and weary to go into it right now.

Brian did not exhibit any signs of illness prior to the seizure, otherwise he would have been taken immediately to the hospital. It was as if God's hand came down and took him away for a specific reason. The autopsy report showed heavy amounts of the germ. He also had developed sepsis and meningitis. We are completely lost and isolated. We have our fun times, we plan events, we laugh a lot with our children, but it is always there. There isn't a second that goes by that Brian is not on my mind. Our children talk about him quite often as well.

We don't know where he picked up the infection. The doctors at Children's feel that he got it from me and that it lived in a mucus membrane for the three-week period. I don't agree and neither do my OBs. We don't understand, however, where else he could have gotten it. Does anyone know or suspect where? Can anyone write to me with a similar story? My husband and I need closure. We need to understand where it comes from so that we can begin to recover. We also need to feel that we are not so alone.

I am new to this web site. Is anyone out there who can help? Thank you all and God Bless You. I am so very happy to hear that there are success stories where GBS is involved. It is such an invasive, rapidly moving infection. I was beginning to feel as though the survival rate was low. I am very glad that it is not.

Part II:

Hello again. Last night I was too tired to go into Brian's unfortunate circumstances. It's early in the morning, now and my husband just left for work. My two older children are still sleeping. This is the time of day that is worst for me; it's also pretty hard late in the evening as well. Writing to you all helps me get through these hours. Our son, as I stated in my previous letter, died of GBS on August 29, 1998. I read from one mother that her son was placed on ECMO. Our son was as well, but the circuit failed, for some reason. The doctors do not know why, but they are running tests to find out.

When Brian first had his seizure, I picked him up. He immediately fell asleep in my arms. Not feeling comfortable with that, I unsnapped his sleeper. I felt his legs. They were cool; I was relieved. However, when I moved to his chest, it felt as though it was on fire. Just then, he began another seizure. I called for my husband and we called 911. While I was talking to the operator, my husband was in a panic. Brian had stopped breathing for a moment and my husband was working so hard to get his breathing back on track. He started breathing again. My husband was running around outside with the baby because he didn't want to waste a second when the ambulance arrived. He also didn't want our two older children who were sleeping upstairs to be upset by ambulance personnel.

When we put the baby in the ambulance, all they had for him was an adult-sized oxygen mask. I know that poor baby couldn't draw any air from that; it was so frustrating. They let me ride in the front seat of the ambulance with him while my husband waited for my mother to come to take care of our children. When we arrived at our local hospital, the doctor told us immediately that our baby was very sick. We couldn't believe it. I have never heard of GBS, even though I was tested for it. It was my own fault; I never asked questions. I trusted my doctors and when the test result was negative, I completely put it out of my mind. I wish I knew what the signs were. Brian was sleeping an awful lot that day and taking only a few ounces of formula. My daughter slept the entire day of her Christening, so I just thought he was having a growth spurt. After only two weeks, he had already gained three pounds, so it made sense. Anyway, the medical personnel was running in and out of his room; everyone looked so worried; one nurse in particular told us to pray. I thought that I would die myself. When they told us they were stabilizing him to move him to Children's Hospital in Philadelphia, it was as if I knew then that it was really bad. They allowed us to go into our son's room to see him. He looked so adorable. He had a breathing tube down his throat, but he was getting pink again. When we started speaking to him directly in his ear, his chest started heaving. I believe he heard us and he got excited by that. We were telling him to fight hard because we could not live without him and his brother and sister would never forgive us if we came home without him. I thought he understood because he was showing signs of improvement. The transport team was also optimistic. But there was an Indian woman who was in training. She was wearing a veil and when I looked at her, she had tears streaming down her face. I guess I knew at that point that we were in for a pretty rough time. Just to let you know, not one doctor even mentioned GBS to us. They probably assumed that's what it was, but the first time I heard GBS was the next day after Brian's blood work had come back from the lab.

We followed the ambulance at 6:00 a.m. to Children's. My husband let me off near the ambulance so that he could park the car and I could be with Brian. My baby never liked car rides. When they took him out of the ambulance, they said he wasn't doing well. What??? I thought he was getting better. Everyone did. I found myself chasing this very large stretcher with this tiny baby on it through cold dark hospital corridors. Beings this was a hospital for children, every room window that I looked in had a sick child - a bald child - a child whose head was in traction - parents crying, praying...I thought I was in a living nightmare and I couldn't catch up with my baby! Things went from bad to worse - much worse. They were trying everything to save him. There were so many doctors and nurses in his room at one time. They tried ECMO, but the circuit failed, as I said. They sent my husband and I down the hall to a private room. They gave us warm blankets; we were so cold. We were trying to rest while the doctors did their work. We still were disbelieving. Our families had never experienced tragedy - we were immune from it, after all. There were social workers, clergy, etc. We never saw it coming. Finally, my husband and I, not being able to take anymore, went outside in the hallway. We still stayed several yards away from his room, afraid to see or hear anything. At that point, there were 10 doctors and 10 nurses in there. Two doctors broke away from the group and walked toward us. We froze. They told us he was gone. I nearly died myself. How could this be?

I immediately asked the doctors to call a priest and have him baptized. We also asked to hold him one more time. They tried to prepare us for the way he looked, but nothing could have done that. When the nurse placed my picture-perfect, beautiful son in my arms, I didn't know him. He was three times his size and dark purple. He was cold and stiff. His nose had been bleeding, so gauze was placed there. The only thing that looked vaguely familiar were the newborn scales of skin still left on his forehead. For the first time in my life, I lost control of my physical body and fell on my knees. My husband took him and in the 11 years that I have known this man, I have never seen him cry like that. They came back for him shortly after and they covered him and we stood by his side as the priest baptized him. I kissed him goodbye one last time and what was the hardest for us was walking out of that room and leaving our son on the table. I was clutching his "Winnie the Pooh" sleeper in my hands. We don't remember the 20 minute drive home, but when we got home, the house was full with family and friends. We wouldn't have survived without that. People need to know that GBS is out there and they need to look for symptoms, signs, anything. If I had known that this disease was out there and what to look for, I am certain my son would be here today. Certain of it! I am a very cautious person by nature. When my three day old daughter first spit up her formula (how many times have we parents been spit up on), I called the hospital. Even during my pregnancies, if I got a cold, I'd call my OB. I was blind sided. If I had known that intense crying was a sign, he would have been to the emergency room hours before. My son had colic. I had already spoken several times to his pediatrician about it. He told me that crying intensely was a normal thing with colic babies. I was never alarmed when Brian cried. I shifted his position. I held him, walked him around, rubbed his tummy, etc. I would have definitely had the hospital run tests on him much sooner if I knew about GBS and its effects and signs. We must get the word out. I am talking to everyone I can about it. I never want another person to live with what my family is living through. Sorry so long. Thanks for your prayers and kind words. Thanks also for getting me through a lonely part of the day while I write this letter.

Brian's mom, Maria

Thanks again. Please let me know if you use my story.

Maria and Ray
parents to Rachael (4 1/2), Michael (3), and Brian (8/4/98 - 8/29/98)







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