Encephalitis Cases
Jordan
In the 26th week of my pregnancy with Jordan I started to have problems. Bleeding and contraction,( I had a hole in my placenta) I was hospitalized for the duration. "Complete bed rest". On the 29th week my water broke, and 5 days latter after the baby going into stress, they induced me. 3 hours latter I gave birth naturally and I had a beautiful baby girl. ( she arrived 11 weeks early) Jordan had a very low birth weight 1465g, she was immediately put into a humidy crib but she was breathing by herself and doing just fine. I was told that all she had to do was grow and I could take her home.
On the 10th day of her premature life Jordan started to show sign of low temperature, congestion she had a small blister type lesion on her chest. All the doctors in the hospital started doing all sorts of test on her, they thought that she had a calapsed lung, a hole in the heart, then a bad cold virus (she was also having fits) then after undergoing a lumber puncture test they thought she had meningitis. And they were treating her for meningitis. Jordan started to loose her fight for life she was put on to a ventilator, that was now doing the breathing for her. My husband and I had hit the lowest point I think that I have ever had in my life, we were told that she would not make it through the night and to prepare ourselves for her death. 5days latter she was still with us just hanging in there.(2020g) and not getting any better.
The next day we were told that our beautiful little girl had tested to not only meningitis but also encephalitis. Her condition is called Premature Neonatal Menengoencephalitis Type 2. They started her on a high 21-day course of Acyclovir. Our first question to the doctors was "how did she get this dreadful disease" answer "she got it from you (the mother) during childbirth." Many emotions were running through .I gave my daughter this disease .I blamed my self for a long time (and I suppose I still do) I am still coming to terms with this.
Jordan started to get better she started to move again and was taken of the life support machine,this was a great day for us . Every day she was making progress until day 9 of Acyclovir, Jordan had a cerebral hemorrhage on the right side of her brain and 3 days latter had a mirror image bleed on the left side of her brain. We had a meeting with our doctors and they told us that Jordan is the first person in Australia to ever had this condition and that they did not know what to do to help her ,or what the out come would be .
After an extensive search on the web one doctor told us that there were 4 boys in France that have had the same condition but were all over the age of 4years. Jordan was the 1st known Girl to ever have this. And lived through it, She will be written up into medical journals and her future medical visits will be documented.
Jordan is now only 3 months old, she had her 2nd CT scan last week and our pediatrician and neurologist have told us that Jordan has extensive damage to the Cortex of her brain (fluid on the brain) and has a low calcium deficiency in the center of the brain. We have been told that she will probably not roll, over sit up, or even walk, she will have balance and co-ordination problems. And most of all she will be develop mentally delayed.
Jordan is drinking from a bottle and sometime smiles at me. We start physiotherapy soon and I'm sure that will be a very positive thing. We have a long road ahead of us and I will definitely keep you all updated on her ongoing progress. She now weighs 3000g.
I love my daughter dearly, She has already proved to the world that she is a very strong fighter, so us as parents will always be they're fighting just as much for her and help her through this terrible ordeal. I would love to hear from anybody that has had a similar experience and I hope that others will in some way benefit from my story. Tracey and Keith Gillette said on there story titled "Jonathan's story" "If it doesn't kill you it will make you stronger" this is so true.
Just recently on 14th February 2001, Jordan had a relapse of HSVE type2. As you can appreciate, this has been a difficult time for us. Just when we thought things were OK .it happened again, she was rushed to hospital. (within a 2 hour period her condition deteriorated drastically).
There was a very big dispute with our doctors on how to treat her. We didn't need this at the time, emotions were already running high. They couldn't decided on what treatment to give Jordan, SO, as they argued, my daughter was getting worse. A 21 day course of oral Acyclovoir, iv treatment , long line, or central line (to administer liquid medication ), * or not at all.
In a very desperate state I sent out e-mails to parents of the encephalitis group asking for their advice , on how their child was treated.( I thought that maybe this might help our daughter). In Australia this is a very unknown disease; as I mentioned in my story Jordan was the first person to ever have this disease in Australia. My doctors knew very little. Jordan came home from hospital on 24th February 2001 on Oral Medication. She is still lethargic but hopefully she will be back to her self real soon. The side affects of Oral Acyclovir (250mg per day) are:
- acute renal failure
- rashes; and
- lethargy.
We Love our little girl so very much; she is so special. Jordan is now nearly 4 months old and just hit a very big 9 pounds. She has tripled her birth weight .
Your help and support has been fantastic. I will keep you updated with Jordan's progress. Jody
Sydney, Australia
Posted: March 12, 2001
