Thursday, December 7, 2006

What happened to My Marissa

This is what happened, for those who are wondering. It is posted at MDC. Some people have asked to spread it around the internet, which is a very good thing, so I thought it should be on my blog as well.

Marissa's story
Marissa was my first baby. She was the only one of my six who was born in the hospital. At the time, I was a very mainstream person who was just starting to realize that there were other options out there. Unfortunately, I didn't figure it out fast enough.

She was perfectly healthy despite the eye ointment which I was told I could not refuse and the Hep B shot, which they had just started giving babies at birth. I questioned a nurse about the shot. She was flabbergasted that I would even think to question it. I can't remember what she said, but I immediately shut up and signed the paperwork.

We took Marissa home and for 3 1/2 months she was perfectly, wonderfully normal. The pediatrician proclaimed her to be very healthy. She slept well at night, nursed well, interacted, babbled, etc. Normal baby. At 3 1/2 months she got her first DTP. That night she got a fever, for which I called the doctor and was told that I should give her alternating doses of Tylenol and Motrin every two hours to keep the fever down. I do not remember how high it was off the top of my head. The fever was gone by the next night and I remember thinking she seemed a little different, a little off. The day after that I was lying next to her in bed and trying to fall asleep when she had a seizure. I had never seen a seizure before and was very confused. I picked up the phone and dialed 911, but as soon as the operator answered, Marissa smiled and cooed at me, so I said never mind and called the ped instead. I brought her in right away and was told she did not have a seizure because she would not have recovered like that. So I took her home where she had another seizure. Then several more as the days went on. We finally got an EEG after several visits to the hospital. It was completely normal. Lots of bloodwork was done~ all normal. Every single test was normal. A CT scan was normal; however, this test was done a month after her initial injury; I think it may have shown the injury had it been done right away.

I asked the doctors if there was any way the shots were causing my daughter's seizures and I was told (quote) "No. That NEVER happens." So like a complete idiot, I continued to follow the recommended vax schedule, with my daughter on Phenobarbital to control the seizures. Her development slowed slightly. I believe this was due to the medicine. She was still within the range of normal. The doctors gave her DTaP to finish up that particular vax series. Obviously they must not have been quite so sure there was no problem with the vaccines, or we would have stayed with the DTP. But that is in hindsight. I had nothing but a feeling of foreboding at the time with absolutely no information to back it up.

At almost 13 months old, Marissa had some words. She said daddy, mama, ba-ba-ba (wanting to nurse), fishy, I hot, among others things. She stood while hanging on to the couch and was starting to cruise along it. She got the MMR at this time. 13 days later she was in my arms seizing uncontrollably. She was taken by ambulance to the ER many times in the next couple weeks. All they would do was up her meds and observe her overnight. At this point she was no longer able to say her words or even sit up, but this was blamed on the medication being pushed higher and higher. We lived in a small town at the time and no one was willing to refer her anywhere else until on our last trip to the ER at that hospital, with my daughter in status (seizures that won't stop) once again, I told the doctor I refused to leave until they sent us somewhere where they knew what they were doing. He refused so I called my father, who drove an hour and a half to explain in his very persuasive manner why they were in fact going to send us somewhere else. We were sent to DeVos Children's, where they immediately admitted her.

Marissa then fell into a pattern of status seizures every fourth day. She had an MRI, artery pokes, more EEGs, etc. Everything said normal. Eventually they gave up and sent us to Detroit Children's. The neuro we found there said to me, when I questioned him about the vaccines, that it was certainly possible. Of course, that was followed by "But vaccines are important". More tests in Detroit. A PET scan that showed she was in fact suffering from subclinical seizures ALL the time. More blood work, a spinal tap; nothing showed anything at all. Except for the film of the MRI we brought with us from Grand Rapids, which our neuro looked at and thought he saw a possible area of injury, but he wasn't sure.

This time was pure hell for my baby. She was a "hard poke" and I was a young mom who didn't know any better. There were several times she was stuck with needles repeatedly for HOURS because they said they simply had to get a line. She screamed and cried for me and all I could do was hold her hand. I started to find my voice in Detroit, though, and before long doctors and nurses were actually listening to me, or pretending to really well.

We finally left with Marissa on three different meds and still having seizures. The rest of her life was spent living with them. I hate them. HATE them. It was like some unseen force grabbed her and contorted her face and body. Just awful. And there were the garden variety partials, too, along with myoclonic seizures added in the mix. She had good periods and bad ones. I had good luck with the ketogenic diet for a while, but then it stopped working. We took her off all meds when her liver started shutting down and the docs were all freaking out (they opposed me stopping the meds, but it worked). At 3 years old she refused to take water orally, so we ended up putting in a g-tube. A year later she refused all oral food. For the previous years, I fed her pureed food by the spoonful, after the g-tube I just pureed it finer and pushed it through her tube.

I had the most success with homeopathy. She had many months without seizures because of it. She would make developmental strides during these periods and then lose them again when the seizures started. They would normally last 1 to 4 months. Every day, all day, and all night much of the time~ not starting out that bad, but working up to that eventually.

Marissa threw up a lot. That was something else that started after the first DPT. It was always cyclical. I never worried about it except when she became dehydrated, at which point we would head to the hospital to get rehydrated. She also had very low iron, but it didn't show up on regular hemoglobin tests, only on a full panel. My belief is that the aluminum in the shots was causing chronic anemia that was extremely difficult to treat. She needed a blood transfusion the year before due to this and I wanted to avoid that. So for those two reasons we were in the hospital when she died. We had no clue it was going to happen. She had been having seizures and throwing up, but she was no where near as sick as she had been many times before. I left at 3am because I was very pregnant and had my 17 month old with me. My dh stayed. He called me at 10am, just as his mother was arriving to watch the kids so I could be with Marissa in the hospital and told me she coded and get there quickly.

I won't belabor that day, because it's not really relevant here. Basically, her brain stem swelled. It happened in her sleep. I missed it. She was dead when I arrived, although her body was being kept alive, which I am grateful for because I got to hold her and love her and say goodbye.

So that's what happened to my Marissa. I MISS her so much. I believe if I would have stopped the shots after those first seizures, or even before getting the MMR she would be here and she would be basically healthy and happy. Instead she had a life full of struggle and heartache and she died at 8 1/2 years old. That should never, never happen. I hope her story can help someone who needs to hear it.

Thanks for reading.


Anonymous said...

I found your blog through Dr. Flea. I am so sorry for your loss, and cannot imagine the pain that you must be enduring. My heart goes out to you and your family.

Regarding the vaccines, they are known not to be risk-free, even if there is no evidence of a demonstrated link to seizures at this time. They are simply meant to be lower-risk than the diseases they cause, which have caused great suffering and death in the not-so-distant past. Epidemiologically, because these diseases are transferred from one person to another, you are safest when you are not vaccinated, but are surrounded by people who are. This way, you do not take the risk of any of the side effects of the vaccine, but there is nobody to transmit the disease to you.

As a parent who has lost a child, possibly related to a vaccine, I think that you have a right to do that. However, extensive advocacy against vaccines is misguided. For example, in the UK, where some people have stopped getting the MMR, there is already an increased rate of babies born with Congenital Rubella Syndrome, something that is unheard of in the US.

I am sorry that this happened to you, and that on top of your loss, you had such a negative experience on the web with the Flea blog. Thank you for sharing your voice and outlook with us.

pepperfly said...

thankyou for sharing your heart wrenching journey. i wish you peace.

The Laundress said...

thcoyI am very, very sorry about your Marissa.

It sounds like you and your family have had a painful journey and have reached some sensible conclusions about what (medically) works and does not work for your household.

I am also so very sorry that some bloggers think you are somehow not entitled to express your own feelings and opinions on your own blog. Please keep on blogging and I hope you do not let any vermin trouble you.

If we all engaged in group-think, there would be nothing to think about and nothing to feel.

You have touched me and I wish you and your family well.

Peace and best wishes!

The Laundress

Krystal323 from MDC's UC forums said...

words cannot convey....

Just know that you and your family are thought of very often, and being sent good, healing vibes from me and mine.

I could have had a story like yours. It was my second baby, not my first, who had a vaccine reaction like Marissa's at 2m old, and I am eternally grateful that I had what it took to buck the system by then.

I just wish I could hug you...I hoep the universe brings you peace someday, some way....all my love

Anonymous said...

I found your blog through google alerts for homebirth, unassisted births. I am so sorry for your loss. I believe your daughter is in heaven with God. Thank you for sharing your story with me and my family.

I am always trying to decide about vaccines, I am scared of them, at the same time scared of most of what they are said to prevent. I agree with you 100% nobody should sacrifice their child.

I hope I am making the correct choice for not vaccinating my other children. My oldest one I did, I was young and just followed like you said. He was also my section before vbacs at home. I just followed, like you said. He now has excema and a cough that comes and goes off and on throughout the year that wont go away for at least one month or more at times. Those both didn't exist before the last set of vaccinations.

May you find peace. You are in my Prayers!

analisa_roche said...

{{{HUGS}}} from a fellow MDC mama. I admire you doing what you think is best for your family, I admire you for taking such wonderful care of so many children, I admire you for trying therapy after swearing off of it.

I don't think people ought to be preaching to you about how important vaccines are in this space.

Love, Analisa (Megs Mom on MDC)