Jasmin not an experiment

Nhyariah Mack has a very rare chromosomal condition, but her mother never wanted to allow her to be a medical experiment. Photo supplied by family.

UPDATE 12/7/2017

Formerly Healthy Girl with Rare Genetic Disorder Dies After Being Medically Kidnapped in Georgia

UPDATE 10/11/2017

Is This Medically Kidnapped Girl in Atlanta Being Murdered for Medical Research Due to Rare Genetic Disorder?

UPDATE 9/29/2017

Medical Kidnapping in Atlanta! Child with Rare Disorder to Die for Medical Research?

Young Girl with Rare Trisomy 9 Condition Medically Kidnapped in Georgia – Life in Danger

by Health Impact News/MedicalKidnap.com Staff

If you had a child born to you that had a medical condition that only one out of every 100 million children have, and of which only 100 children worldwide have been diagnosed with this condition, should the medical system and the government have the right to take your child away from you so that they could research this condition for the “greater good”?

If this sounds like something that might have only happened in tyrannical states like the former Nazi Germany, you are wrong. Not only does this happen in the United States today, it is actually legal. See:

Medical Kidnapping in the U.S. – Kidnapping Children for Drug Trials

The latest story we bring to you involves a mother from Florida and her daughter who was born and diagnosed with Trisomy 9, an extremely rare chromosomal abnormality.

The mother, Jasmin Mack, moved with her daughter Nhyariah to Georgia to be closer to family members. Nhyariah was doing well for several years prior to that time while living with her mother in Florida.

When Nhyariah was 3 1/2 years old, Jasmin Mack says that a genetic counselor from the University of Florida hospital in Gainsville offered her money to enter her daughter into medical research studies, but she refused.

After moving to Georgia, the first doctor they saw recognized how rare Nhyariah’s condition was and allegedly commented:

Oh! I have some friends next door that would LOVE to see you!

This was Henrietta Egleston Hospital for Children in Atlanta, which is the pediatric teaching hospital affiliate for the Emory University School of Medicine, located on the campus of Emory University.

Even though Nhyariah was not sick, they immediately admitted her to the hospital, and used the Georgia Division of Family and Children Services (DFCS) to take over custody of Nhyariah. Jasmin was kicked out of the hospital.

Today, Nhyariah’s condition has deteriorated greatly while in state care due to undergoing several surgeries, and her mother Jasmin just wants to take her back to Florida, as she fears that the medical professionals in Georgia will soon kill her daughter.

I feel like if she can get out of this hospital, she can have a chance.

She’s a rare child. She’s made it this 10 years.

Born with a One in 100 Million Condition

Nhyariah was born with Trisomy 9, an extremely rare chromosomal abnormality that occurs when there are 3 copies, rather than 2, of chromosome 9.

In the Mosaic form of Trisomy 9, which Nhyariah has, some of the cells in the body have the extra chromosome, while others have the normal 2 copies. In Full Trisomy 9, all of the cells have the third chromosome. Most babies with Full Trisomy 9 do not survive until birth.

The prognosis for children with Mosaic Trisomy 9 varies greatly, depending upon what organs are affected. The disorder presents differently in each child, with a wide variety of symptoms and complications. The condition is so rare that only a limited amount of information on it even exists.

In Nhyariah’s case, only about 20 percent of her cells are affected.

Jasmin little in pink dress

From the beginning, Nhyariah has had a smile that lights up the room. Photo supplied by family.

She was born with a common congenital heart defect called patent ductus arteriosus, and she had surgery when she was 2 years old to close it. Doctors in Florida continued to monitor her heart condition over the years.

Jasmin says that her daughter has always been small for her age, and was diagnosed as failure to thrive at one point. Doctors in her native Florida recognized that this was part of her medical condition, and not something that her family caused. A g-tube (feeding tube) was inserted and she grew, albeit slowly.

The only other surgery that Nhyariah needed during her childhood was a shunt placement in her head to drain excess cerebrospinal fluid.

She was tiny, but she was happy and doing well. Her smile lit up the room wherever she went. Jasmin says that she is:

a very special little girl that’s loved by all her family and those who cross her path along the way.

When Nhyariah was old enough, she started school and attended daily. She is described as “happy-go-lucky.” Though she had some developmental delays and was in a wheelchair, she was not sick and did not have any serious health problems. She had a feeding pump, but did not need any medications.

Jasmin wheelchair

Nhyariah in her wheelchair, ready for school. Photo supplied by family.

The Mack family lived in Panama City, Florida, and the specialist doctors that she saw were 4 hours away, in Gainseville, Florida. She saw them routinely and her condition was monitored.

When Nhyariah was 3 1/2 years old, Jasmin Mack says that a genetic counselor from the University of Florida hospital in Gainsville offered her money to enter her daughter into medical research studies, but she refused. She knew that her child was rare, but she did not want her to become “an experiment.”

“Georgia Has Done Me and My Child Wrong”

In late 2015, Jasmin moved her family to Georgia to be closer to her sister. She anticipated that the move would be good. It would place them near a bigger hospital than the one they left behind, and she hoped that perhaps doctors there would be able to get her wheelchair-bound child walking some day.

Now, she just prays they don’t kill her daughter.

As her family made the transition to a new home in Georgia, Jasmin did not switch over her insurance immediately to the new state. She continued to take her daughter back and forth to her old doctors in Florida for a while.

Their first doctor visit in Georgia was supposed to be a routine appointment with a GI (gastroenterology) doctor, Dr. Gayathri J. Tenjarla. That visit proved to be disastrous.

The doctor reportedly came into the room and looked at the chart (not her daughter), then spoke the chilling words that Jasmin will never forget:

Oh! I have some friends next door that would LOVE to see you!

Jasmin told Health Impact News that “from that, I knew that she had noticed my daughter’s disability.” It appeared to her that Nhyariah was little more than a science experiment to her, because of her fascinatingly rare medical condition.

Jasmin Dr_Gayathri_Tenjarla

Dr. Gayathri J. Tenjarla. Photo source.

Without allegedly doing any type of physical assessment whatsoever, Dr. Tenjarla insisted that Nhyariah be admitted immediately to the hospital, even though she wasn’t sick.

Doctors began running all sorts of tests and changed her feeding regimen. After spending a week with her daughter in the hospital, Jasmin says that security guards came in and dragged her out of her daughter’s room and made her leave.

DFCS seized custody of Nhyariah on the grounds that medical staff was concerned about her being underweight and that the doctors said that Jasmin didn’t have the child under medical care. They later alleged that she had missed appointments in Florida which showed “negligence.”

She was, in fact, under medical care because her mother had been taking her back and forth to Florida while they were “awaiting the Medicaid switch” from Florida to Georgia. Nhyariah has “never been a big girl,” Jasmin says, but it is part of her Mosaic Trisomy 9 condition.

She has been followed her entire life by Children’s Medical Services, a collection of programs under the Florida Department of Health designed for children with “special health care needs.”

Jasmin points out that if she had missed appointments in Florida that were a concern, the doctors there would have reported her.

They didn’t.

Jasmine told us:

Georgia has done me and my child wrong.

One report from DFCS states that a possible “future harm that may occur to the child if they remain at home” is that:

Missed medical appointments may cause future harm with Nhyariah’s ongoing medical issues.

Unnecessary Surgeries Almost Cost Her Life

The real harm that has happened to Nhyariah in Georgia state custody is far worse than any possible imagined harm that DFCS social workers told the court that they wanted to avoid.

It was 2 weeks after she was kicked out of the hospital before Jasmin Mack was able to find out any information about her daughter, and what she learned horrified her.

Nhyariah had just come out of surgery. Doctors at Children’s Atlanta had reportedly decided that she had sleep apnea and needed to have her tonsils removed.

Jasmin smiling in hospital

Even in the hospital, Nhyariah’s smile remains. Photo supplied by family.

They did this without consulting or informing her mother. Jasmin’s parental right to make an important medical decision for her daughter was ignored, and she later learned that the hospital did this surgery without first obtaining any of her medical records from Florida.

The surgery was not something that Jasmin believed was necessary, and she would not have consented.

While her daughter was in surgery without her knowledge, Nhyariah’s left lung collapsed. She spent an entire month in the hospital.

When she was released, she was sent with an oxygen tank to a foster home with strangers. She was reportedly rushed back to the hospital soon after and put on oxygen full-time.

She had never been on oxygen in her mother’s care.

There are differing medical reports about her condition. According to one medical report, Nhyariah had “acute respiratory failure following trauma and surgery.” Another copy of the report calls it “severe lung disease.”

A couple months later, some of the doctors at the teaching hospital reportedly decided that it would be a good idea to surgically put a band on Nhyariah’s stomach. Even though Jasmin refused to consent to what she termed an “experimental surgery,” the hospital proceeded with the surgery.

It lasted 4 1/2 hours.

Jasmine found out that her baby girl coded during the surgery and it took them 2 hours to get her fully resuscitated.

Nhyariah spent the next 30 days in the ICU. She developed RSV (a respiratory virus) and a bacterial infection.

Since that surgery, she is now on about a dozen medications and requires oxygen full-time. She has gained more weight than is healthy, and her hips have become dislocated. She gets out of breath when she moves.

While she was at home with her mother, she never needed to be on oxygen or was not on any medications, even with her disorder.

Requests to Transfer Denied

Jasmin worked to jump through all of the DFCS hoops, completing all of the classes and training that was ordered.
Nhyariah’s condition had badly deteriorated. Nonetheless, the court and hospital agreed to allow her to go home to her mother’s care on April 19, 2016.

She required round-the-clock care, and staff members from a clinic connected to the hospital were placed in the Macks’ home to assist with Nhyariah’s care. Jasmin says that they harassed her relentlessly, daily asking her, “Are you tired yet?” They seemed bent on either seeing her give up or getting Nhyariah back under state custody.

Social Worker Allegedly Almost Quit DFCS Over Injustice in Nhyariah’s Case – Whistleblowers Welcome to Contact Us

It got so bad that a social worker with DFCS who saw what was happening talked to Jasmin about it.

The social worker reportedly stated she might quit her job over the injustice that she was seeing.

We will not reveal any names of social workers from Georgia DFCS who do not like what the department is doing with Nhyariah’s case, so if you want to comment on this story, please contact us here. We extend the same invitation to anyone that was or is currently on the medical team.

Jasmin and her baby

Jasmin and her daughter. Photo supplied by family.

Mother Pressured to Approve Medical Procedure or Have Daughter Sent to Hospice

Nhyariah’s health did not improve after the surgeries and complications, and she was readmitted back into the hospital on June 1. They told her mother that a tracheotomy was necessary for her “to stay alive.”

Jasmin believes that the real purpose for the trach is that it will mean she would always have to be institutionalized and could never come home.

Then they could throw her away like trash when they are done with [experimenting on] her.

Jasmin was given the choice of approving the tracheotomy or sending her daughter to hospice. She rejected both of those options and instead asked for her court-appointed attorney to put in a motion for her daughter to be transferred back to her previous hospital in Florida for a second opinion.

Judge Blocks Mom from Taking Daughter Back to Florida

The very next day after the request to transfer, DFCS called for an emergency hearing to place Nyariah back into state custody. The attorney has since quit working on her case, and she needs a new attorney.

At the hearing, one of the attorneys reportedly told the judge that Nhyariah had a severe lung disease and that she will not survive.

Judge Fatima El-Amin reportedly told Jasmin Mack that she was placing Nhyariah back into state custody while she is in the hospital. She said that she could possibly go home with her mother if she gets released, “unless she is placed in hospice.”

Jasmin alleges that Judge El-Amin “took my rights back to keep me from transferring to Florida.”

Jasmin Judge Fatima El-Amin

Judge Fatima El-Amin. Photo source.

Nhyariah has been approved by the Florida hospital to transfer there, but the Georgia hospital must agree to it before it will happen.

In what appears to be becoming a pattern with hospitals in the news lately, Jasmin says that the Henrietta Egleston Hospital for Children in Atlanta does not want the transfer to happen, and only wants Nhyariah to see their doctors.

In previous stories we have reported regarding Baby Steffen, who was taken off of life support before a second medical opinion could be obtained, the family had allegedly found at least 10 hospitals willing to give a second opinion, but Vanderbilt refused to talk with any of them. See:

Tennessee Family Wants Daughter and Sister of Deceased Baby Steffen to Come Home

Civil Rights Abuse? Judge Only Gives Parents 24 Hours to Find Doctor Before Baby is Removed from Life Support

If Nhyariah stays in Atlanta, Jasmin is afraid that her child will soon be on full life-support. She may not make it out of the hospital alive. Her mother believes that her best chance for survival is for her to transfer back to the hospital in Florida that has been treating her for most of her life.

Jasmin big smile

Jasmin desperately wants the chance to save her precious little girl’s life. Photo supplied by family.

Like Baby Steffen’s family, Jasmin believes that the choice should be left up to her, the parent, not to a hospital or a judge. She never consented to have her daughter admitted to the hospital in the first place. Her daughter also has no voice in the matter. Jasmin says, “I have to be her voice.”

Nhyariah has since developed MRSA and another serious bacterial infection in the hospital, and is on strong antibiotics.

In a meeting with doctors and DFCS workers on Thursday (July 13th), Jasmin was absolutely horrified to learn that the doctors at Children’s in Atlanta did not even know that Nhyariah had a heart condition. She told us that:

These surgeries were done without them paying any attention to her medical records! They have had her for a year without ever having her see a cardiologist or a neurologist.

Ironically, Jasmin Mack says that her daughter’s hospital room is located literally next door to the research lab.

In 9 months my child went from living a life quality of 8, 9 on a great day. Going to school on no medications, happy go lucky. How on earth did she get to a 1, barely living!! On 12 different medications, oxygen and vent dependent. Unacceptable.

How You Can Help

Jasmin Mack asks first for prayer. She believes God is big enough to help her daughter and that Nhyariah matters to God. They also need an attorney willing to help fight for Nhyariah.

Governor Nathan Deal is the governor of Georgia, where Nhyariah is being held by DFCS and the hospital. He may be reached at 404-656-1776, or contacted here.

Senator Emanuel Jones represents the district where Nhyariah was taken into custody. He may be reached at 404-656-0502, or contacted here.

Representative Renitta Shannon is their House Representative. She may be reached at 404-656-7859, or contacted here.

The Twitter hashtag the mom is using is: #SheIsHuman