Baby Jaxon Gilmore. Image from Bring Jaxon Gilmore Home Facebook Page.

by Terri LaPoint
Health Impact News

Jessica Gilmore says, “I just want to love my grandson. That’s all I want.” However, if Connecticut DCF (their child protective services) has their way, little 17-month-old Jaxon Gilmore, who may not have much longer to live, will be adopted out to strangers, all because a grandmother allegedly questioned authority, seeking the best possible care for her sick grandchild. Here is the family’s story as reported to Health Impact News.

A Premature Baby with Health Complications

Jaxon was born very prematurely. His mother Alysia had not reached her third trimester when she developed serious complications in her pregnancy, including pneumonia, DIC, and HELLP syndrome. On June 16, 2013, her baby was born while she was in ICU, at just under 28 weeks. Baby Jaxon suffers from Cerebral Palsy and Infantile Spasm (a type of epilepsy), as well as other medical conditions. He has spent much of his young life in the hospital.

During the difficult journey of seeing her beloved grandson in the NICU for extended periods of time, Jessica diligently sought the best care and the best information she could find. Though she is not currently practicing, Grandma Jessica has a bachelor’s degree in nursing, which has given her an advantage as she researches. It has not been easy to find answers to Jaxon’s complex health issues. Since Jaxon’s mother Alysia almost died during the birth, Grandma Jessica took on the responsibility of overseeing the care of her young grandson.

Connecticut Children’s Medical Center was where Jessica and Alysia first heard the devastating words they will never forget:

“Enjoy every second with him,” because CCMC did not expect Jaxon to live long.

Seeking out the Best Medical Advice Possible

Over the course of the next several months, Jaxon’s family took him to Middlesex Hospital, to Yale, and to Boston Children’s Hospital, hoping to find another answer. They wanted to find someone to give them hope that they could help their sweet baby get better. But one after the other gave them the same, horrible response. “Enjoy every second with him.” He was very sick.

The family went to different doctors and different hospitals trying to find answers and the correct treatment for this “medically complex child,” and to get Jaxon’s numerous seizures to stop. Jessica reports that at times he was experiencing 60 to 100 seizures a day. Once, while Jaxon was experiencing a seizure on a doctor’s table, it was allegedly dismissed as “reflux.” Sometimes the experts they looked to didn’t have all the answers.

Another time CCMC reportedly phoned the Gilmores to inform them that they were calling Jaxon a “do not resuscitate,” meaning that if something were to happen to Jaxon and he were to stop breathing, the hospital would not step in to save his life. Jessica disputed that label, and demanded that “my grandson is a full resuscitate.”

After nine months of seeking the best possible care they could find, Ms. Gilmore found a neurologist at Boston Children’s hospital who figured out that Jaxon’s correct diagnosis for some of his medical issues is “Infantile Spasm.” The doctor prescribed a combination of ACTH and Sabril, a medication that only a few doctors in a few hospitals are licensed to prescribe. The medications were working, and the seizures were getting better.

Connecticut Child Protective Services Accuses Family of “Doctor Shopping”

Instead of applauding the Gilmores for doing everything they can to find help for their most helpless family member, Connecticut DCF (child protective services) stepped in, allegedly accusing them of  being “argumentative” and of “doctor shopping.” In March, DCF filed an OTC: order of temporary custody.

All of a sudden, it was allegedly no longer OK for Jessica to care for Jaxon, because she “questioned authority,” even though admittedly DCF had no concerns about Jessica’s care of her adopted seven-year-old granddaughter whom she had taken custody of when her other daughter tragically died a couple years earlier.

American Medical Association Encourages Second Opinions

Another name for doctor shopping might be “asking for a second opinion” or even a third. While conventional wisdom has always held that it is due diligence to seek a second opinion for serious medical conditions, the American Medical Association itself has upheld the right of patients to do so. In their Code of Medical Ethics, the stated opinion of the AMA is that doctors should facilitate their patients asking for second opinions:

“Patients are also free to obtain second opinions on their own initiative, with or without their physician’s knowledge.” (Source.)

By default, should not this right of patients extend to parents asking for a second opinion for their child?

However, this is a point the family feels DCF and possessive doctors seem to have missed. Though the AMA position has not changed, “doctor shopping” and disputing a doctor are apparently no longer acceptable to do in the pediatrics/child protective services world.

When shopping for a car seat or a refrigerator or flat-screen TV, the public is expected to shop around and ask questions, to find the best possible product to meet their needs. Yet when seeking life or death answers for the person who means more than anything else in the whole world, parents are reporting to us that seeking a second medical opinion is being used as grounds for what they call “legal kidnapping.”

Baby Jaxon Taken Away from Family – Family Claims he is Suffering as a Result

The family states that Connecticut DCF took custody of Baby Jaxon in March. Since Jaxon has allegedly been in state custody, his family claims that they have had a hard fight to ensure that Jaxon still receives the medications that are helping him. He has allegedly gone for days without it, during which he reportedly suffered more seizures.

Vaccines Allegedly Given to Sick Baby without Family Approval and Against Vaccine Manufacturer’s Advice

Jaxon was fully vaccinated at birth, and the family reports he has been current on all of the recommended vaccines.

Once under the care of DCF, the family says that Jaxon contracted an infection during his stay at the Hospital for Special Care. He was allegedly running a fever at the time the hospital wanted to vaccinate him against RSV (Respiratory syncytial virus.) Despite the fact that Ms. Gilmore allegedly requested they delay the shot until he was better, she states that the hospital gave it to him anyway. She says that he almost died from it. Jessica told us that the manufacturer of Sabril recommends that Jaxon should have not have received any vaccines during his first six months on the medication.

Using a Psychological Diagnosis to Remove Custody

Jessica continues to advocate for the best care possible, but she believes she is being stonewalled.  She claims there are a number of facts that would exonerate her, as well as documents and motions filed which have not reached the judge. She says DCF has focused on the “argumentativeness,” something that others might see as a mama bear (or grandmama bear) fighting for and advocating for her cub.

After the death of her first daughter and the difficult birth of her grandson Jaxon, Jessica was diagnosed with PTSD (Post-traumatic stress disorder). DCF has also alleged that Jessica’s PTSD precludes her from adequately caring for her grandchild.

If this is truly the case, by their logic, few veterans should have care of their children or grandchildren. Adult survivors of sexual or physical abuse would be precluded, as well as many parents in Manhattan who were near Ground Zero on 9/11. Survivors of earthquakes, tornadoes, and car accidents would be called into question as well. In short, basing a person’s ability to care for a child on a diagnosis of PTSD, without evidence of harm, would probably warrant the removal of millions of children from the custody of their families.

For a child, being separated from their family and taken from their home is, itself, quite traumatic, and it is a safe bet that many children in foster care suffer from PTSD simply from the separation. When a child is taken from the home for physical or sexual abuse, the benefits of removal might outweigh the risks. But even so, the separation still causes trauma. When the child is taken from a loving family who loves and nurtures the child, could not the state be accused of becoming the abuser, causing PTSD in some of the very children they purport to save?

Ms. Gilmore told Health Impact News that this situation seems to boil down to a couple of people associated with the case not liking her because she was has been such “a fierce advocate for [her] grandson’s needs.” As crazy as that sounds, a legitimate source involved with the case admits, “It is obvious that they don’t like you. It is obvious that this is about ‘like.'”

A Baby’s Life is in Danger

No one involved with this case knows how long baby Jaxon will survive. His medical condition is very serious. A friend of the family, Jacqueline Lilly, has written a petition for the family which they plan to send to Governor Dannel Malloy. In it she writes this heartbreaking statement:

“A prolonged seizure can take the life of this precious child – and if this sweet boy is going to die, he deserves to be surrounded by the love of his family.” (Source.)

There is a custody hearing scheduled for Tuesday, November 25. Jessica Gilmore has allegedly been told there is a possibility that, within the next six months, Jaxon may actually be adopted by someone else outside the family, even though he has a grandmother who loves him with all her heart and wants him home. He is, in her words, “a precious baby whose life matters” whom she loves “heart and soul.”

“I see my grandson, not his complex medical needs, which of course I know well, and I am trained to care for him competently. I see a precious life, not a number or a file on someone’s desk.”

Supporters are urged to sign the petition to request that Jaxon Gilmore be allowed to return home. A Facebook page has been set up to help support the family and contribute ideas to help.