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The Story of Lindsay Gentry and her parents Mike and Kathleen Gentry "A Myotonic Muscular Dystrophy Miracle Story"
Link to a Letter from Mike and Kathleen Gentry to The American Public and All People of this world.
You can contact the Gentry Family at: lndsay@qnet.com
These are the medical highlights of Lindsay's
first
6 years of life.
When Lindsay was born she was declared clinically dead at Kaiser Permanente. Her Kaiser physician was convicted felon and child molester Dr. Jay Tibbles of Kaiser Fontana facility. There are numerous online article about the Ex Dr. Tibbles. Dr. Tibbles suggested that she should be taken off of life support. Dr. Blaskovics of Fontana Facility told Lindsey's parents that they should have her die because she was taking up a bed that another more "viable" child could be occupying.
She had 11 major problems, 5 of which were capable of causing death within minutes.
Half of her doctors recommended turning off her life support "For the benefit of her family."
Mike and Kathleen responded by saying - "You mean kill her for the Benefit of the Hospital don't you?"
During her first weeks her liver did not work. The only way to keep her alive was to do complete blood exchanges.
Four times her entire blood volume was drained and fresh whole blood was pumped into her 3 pound 10 ounce body. Mike donated his blood and the Gentry Family's Church donated the rest. Lindsay had high Bilirubin and Jaundice.
During her first 78 days in the hospital, from birth, both Mike and Kathleen worked with doctors and nurses inside the Infant Intensive Care Unit. They did noninvasive/non torturing treatments. They also gave Lindsay verbal and touching encouragement's so she would have a will to live.
At that time, parents were not allowed inside NICU's as a general rule. Mr. and Mrs. Gentry wanted to be with Lindsay though. Mike convinced the medical personnel that it was in Lindsay's best interest to have them work with them. This not only benefited Lindsay but Kaiser as well, because the family was able to do quite a bit of the nursing work, thus freeing some of the staff to work with other infants. Mike Gentry knew that this would increase Linday's chance of survival.
Mike and Kathleen took turns working with Lindsay. They spent up to 14 hours per day caring for her in that sealed airtight NICU.
Because of this special unique medical care several pages were added to Pediatric Books. Lindsay was truly a "Miracle Baby" as a plaque placed outside of NICU by Kaiser stated.
Lindsay may still hold the record for a Congenital Myotonic Muscular Dystrophy, also known as Steinert's Disease child: 60 days on life support and she survived for over 15 years. Lindsay was born in 1981.
At birth, both of her legs were dislocated from her hips from a forced delivery (fetal distress:also Flaccid/No Tone, all muscles, but her heart. The doctors said: If she lives to 4 or 5 years of age they may be able to correct, fairly well her legs - but they offered no guarantees with surgery.
Mr. Gentry spoke with Dr. Lal, the Orthopedic Surgeon regarding fixing her legs NOW and without doing any surgery. He informed Dr. Lal of his college pre-med background, and the fact that for a while he had been a teacher of zoology. Mike asked Dr. Lal "Aren't bones mostly cartilage at birth?" Dr. Lal agreed. "Then why not position the head of the leg bones in front of the hip socket openings and make a simple brace and straps to hold her legs. Then we can wait a few days or weeks to see if it works?" Dr. Lal said that he had not thought of it, but while bones are soft, it might work.
The casting tech, Evan Hobbs worked with them in building a brace for Lindsay's hips.It worked!
Her legs reseated in a few weeks. This saved Lindsay from undergoing two very invasive surgeries.
For many weeks - 6-8, Lindsay was fed on Hyperlon, Intravenously. Eventually Lindsay's undersize and incompletely developed stomach and intestines accepted the tube feedings which are called Oral-Gastric feeding. Mike and Kathleen learned how to care for Lindsay in NICU and continued to do so when they took her home. (throat, stomach and intestines are 65% muscle)
The doctors told them to not expect Lindsay to live over a year and that a Nasal Gastric Tube would be put in her stomach when her gag reflex made Oral-Gastric Tube feeding possible.
Once again Mike and Kathleen got busy with coming up with an alternative plan to overcome this problem. Mrs. Gentry made a loose baby food preparation. As Mr. Gentry had to return to work it was Kathleen that did most of the feeding. Before every meal Lindsay would receive this preparation prior to the tube feeding. Within two weeks her diligence and patience paid off as Lindsay now ate and swallowed just like everyone else did in this world. The Gentry's say that of course it was very messy as Lindsay was only three months old at this time!
Lindsay had been born with severely clubbed feet. The doctors said that this they would also address this condition if she lived to be three years old. The Gentry's asked what could be done now? They learned that casts placing tension on knotted and shortened tendons were to be done first and then surgeries to lengthen them.
Evan Hobs, who now runs the Prothesis Department of Kaiser Fontana had made the first of some 40 or 50 sets of casts for Lindsay's feet, also with many A.F.O.'s which the Gentry's paid for themselves.
At first the casts were changed weekly and then after the first year she used plastic foot braces, AFO on her feet. Then Lindsay walked! Seven surgeries were performed, all elective.
Her parents at any time could have chosen to have left her in the hospital to die but they decided to take her home, teach her to eat and walk and repair what could be done to her body. All of this in contradiction to what the majority of the Kaiser Permanente staff wanted them to do. Kaiser told the family that Lindsay was using valuable resources that other children could benefit from.
The entire family, including Lindsay's older sister were trained to listen to her normal sinus and pulmonary rhythm, in short her heart and lung sounds. The Gentry family had formed a strong team to help Lindsay live as normal as possible.
At the age of 4 months, Mrs. Gentry began taking Lindsay to a special Ed school on a voluntary basis. It was called an early intervention class. For the next 4 and 1/2 years she drove to these classes and worked with the teacher to overcome Lindsay's multiple-Handicaps as well as could be done. Both of Lindsay's parents worked with the Early-Intervention teacher not only directly in the classroom but also in planning special functions for entire families and teachers. It was a very fun and rewarding time for them all.
From the ages of 1 to 6 Lindsay, her sister and her parents called home Northcliffe, Texas. Dr. Kaye Wilkins performed the remaining 5 surgeries on her feet. He said she would only walk on crutches or use a walker for the rest of her life.
Mike and Kathleen Gentry exercised and massaged those little legs of Lindsay's extensively over the next few months. They held her little hands while she learned to walk. Lindsay only used a poggan-bug type wheelchair on long walks and if she was tired out. After a few months of this Lindsay one day while shuffling along the couch just turned and walked across the room to her Mom unaided!----Lindsay's parents took her to Dr. Wilkins office and she walked across the waiting room into his arms. He exclaimed "That was a Miracle from God. That was not supposed to happen!" Lindsay was four years old.
From that day until 1/2 hour before her death SHE WALKED!
Later Lindsay even learned to ice skate!
However, Lindsay still had a serious medical condition and as she grew older she also became blind. She required the needs of an experienced Braille instructor. Mike and Kathleen Gentry increasingly found the public school system to be nothing more than a baby-sitter for their daughter. Differences of opinion arose between the school administration and the Gentry family. For every skinned knee, scratch, bump or bruise that Lindsay supposedly came to school with the administrator would contact a Children's Services Investigator and attempt to bring charges against Lindsay's parents. One one of these incidents, Lindsay did have bruising. She had started to fall at her Church the day before and a gentleman reached down and grabbed her thus preventing her from getting some scraped up knees. Unfortunately the way in which he grabbed her it left a bruise on her back and one on her arm.Members of the public that had been in a similar situation with a handicapped child, or a disabled adult began to relate to the Gentry family how they were becoming a target because the majority of people do not understand that while a person may have a disability, they still encounter the same scrapes and bruises that the rest of us do. Especially little ones that are just learning to get around on their own.
Finally, to get Lindsay an education in which she would actually be learning something the family decided to place her in a home school program.
5 months later Lindsay's health had deteriorated to the point that she was again hospitalized at Kaiser Permanente Hospital. Lindsay who was a small child no longer could eat as she had before. The disease had progressed. Kaiser finally diagnosed a pneumonia but did not treat her for it. Lindsay passed away at the age of 15, on her 9th day in the Kaiser Hospital.
The school authorities upon hearing of her death contacted the Antelope Valley Sheriff Department and insisted that the family be charged with starving their child to death.
Upon the Wilsona School Administration's insistence Mike and Kathleen Gentry were arrested and tried twice in this matter. Children's Services Investigators testified on behalf of this family. People that worked with and socialized with the family also testified on behalf of this family. Member's of the Sheriff's Department also testified on behalf of this family but all of this was not enough.The first trial resulted in a hung jury. The second resulted in a conviction against them. The judge during sentencing really didn't say much about what the Gentry's had been accused of but rather what Kaiser Permanente did not do. He sent them to prison: 6 years for Mike and 4 years for Kathleen.
Today the Wilsona and the Palmdale School District Administrative Officers have told numerous members of the community that if parents want to place their children in a home school situation that like the Gentry family they may also just be accused of child abuse and have numerous accusations made against them.
If Mike and Kathleen Gentry had just done what Kaiser Permanente had advised them to do at the birth of their daughter Lindsay they would have not gone through any of this. Instead, because they loved their daughter and because they provided her with more medical care than had been done previously with any child within the Kaiser system at that time and because they did the best that anyone could possibly have done for a child with this medical condition they spent time in a prison.
If they had done what Kaiser had advised in the beginning and several times over the years, then no one in this world would have said a thing about Lindsay's death. We have all seen other children treated in such a non caring manner as Kaiser proposed. Teacher's that park a child in a wheelchair off in the corner so that they have free time to work with other normal children. Babies left in a crib with no one to talk to them or hold them. Children that are not given love and are just allowed to wither and die. We have all seen this but Lindsay was different. She had a family that loved her, that cared for her and a family that did everything possible under the sun to allow her to have as full a life as possible.
If Mike and Kathleen Gentry did what Kaiser wanted then two things would have happened. The first is that Lindsay would have died as a baby. The second thing is that if she had not learned to walk, she never would have fallen as any normal child does growing up and Lindsay would never have skinned her knees nor ever been scratched or bruised. This happened to her a total of 6 times in 9 years, according to some school teachers.