Lexi was born as a normal, healthy child, but because doctors missed the fact at birth that she had low thyroid, they miscalculated what would happen when she got jaundiced. By not treating it quickly, she developed kernicterus, which the Charlotte Observer describes as following:
Lexi has kernicterus. It's a rare form of brain damage caused by newborn jaundice. It gave her cerebral palsy and dystonia, a movement disorder, and because of that she cannot walk and she cannot talk.
She has been receiving deep brain stimulation, a procedure that has worked well with patients who have dystonia or Parkinson's Disease. She is the first child ever with this condition who has been given this procedure.
These are tough times for the Haas family, which is a wonderful collection of very intelligent and capable children and some of the best parents I have known anywhere. My wife, Jo, has been with them during this time, and we miss her back on the homefront (which, thankfully, has not yet descended into chaos in her absence), and I wish my in-laws the very best.
7 comments:
Thanks for the kind words and letting us borrow Jo these last few days. She was a great help especially after I had to leave yesterday.
Ken
I am curious as to how congenital hypothyroidism was "missed" by those "miscalculating" doctors.
All children in my home state are screened for this relatively common abnormality by a simple blood test taken shortly after delivery.
This blood sample is sent to a lab that screens the blood for a number of abnormalities. There are only a couple of ways this abnormality could be "missed."
1. Parents who refuse to have the screening done in the first place because of "privacy" concerns.
2. A false negative result.
3. Sample was run, test was abnormal, but: results not reported promptly, lost, misplaced, etc.
4. Run-time lag: sample drawn, sits in lab over long weekend, or in lab short of personnel/eqpt, delays diagnosis, hyperbilirubinemia develops quickly and is "assumed" to be of the "normal" variety until the test result comes back which is now "too late" as kernicterus has already set in.
None of these are due to the fact that "doctors missed the fact...that she had low thyroid." Doctors ALWAYS miss the fact that babies have low thyroid. That is why there is a screening test.
So, while I empathize and sympathize with you and yours, your language is inflammatory and misleading. May "deep brain stimulation" result in an improvement in her condition.
Minneapple_Doc
They simply overlooked the results. One physician told my relatives that it "was the worst case of malpractice he ever had seen."
You might want to read the article before accusing me of using "inflammatory" language. Lexie was severely jaundiced, but the doctor insisted that nothing was wrong. It simply was an error on his part.
The purpose of this post was not to attack the doctors and certainly not all doctors. Indeed, these things happen at times and no doctor is infallible. I am not of the belief that every doctor needs to be sued every time the results are not perfect. But they did mess up this time.
Ken and Susan,
( thanks also to WA for the blog )
I have Generalized Torsion Dystonia that had my entire body tied up for years. I had DBS on one side in Feb 2000. After being diagnoisd with ET (Essential Tremor) and GD (Generalized Dystonia) at age 29 - having DBS surgery in 2000 gave me my life back...
Now I am 49 and I am off all meds and the fact I can in a chair and type this shows you how well I am doing today. Dr. Vitek at Emory University is like my "GOD" and he is my hero. What he did for me is a MIRACLE !!... I go back to see my local neurosurgeon for new battery every two years (technology may change that soon though) as a outpatient. Takes about 1 hour. No biggie. I am on my 5th battery todate.
I have spoken with several support groups across the nation and I have told them your story. We will always be around to provide support and offer an open ear for you. Lexi is a brave girl.
Please contact me if you have questions or just was to talk. My email is srchancey@gmail.com
We hope and pray Lexi has a complete recovery from her lung problem and has a great recovery after DBS surgery. One problem I haved noticed with children who have had DBS that I've noticed is the fact they it is hard for them to leave the surgery sites alone. When they start to heal the can become very itchy. I was very careful with my stiches and keep the areas very very clean. The doctors told me that was very important because if you dont - getting an effection is NOT an option during this process.. An infection could reverse alot of the progress Lexi makes now.
We want to help in anyway we can and we will always be here for support for you Ken.
If you need anything or have question please email me (srchancey@gmail.com)..
Thanks for your time ! God Bless
Steve Chancey
Steve,
I have sent your comments to my sister-in-law, who is traveling to Richmond with Lexi today for more surgery. (It is time to put in the battery pack, so with Lexi, batteries are included.)
I am sure that she and the family will be very, very encouraged by your words. Thanks for posting.
Hello - I recognized Lexi on the front page of the paper. I used to work a the Harris YMCA and Lexi was in my classroom. I will never forget her sweet personality. I have been praying nonstop for her. Is there anything we can do for her or her family? What a great article in the paper!! My thought and prayers are with your family. Please let me know if there is anything that your family needs or anything that we can get for Lexi.
Nora Culp
norafran@hotmail.com
Thanks, Nora. I'll send the comments to Susan and Ken.
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