Join Zaelah Jayms' Fight For Justice

**Sick baby trigger warning**

I am raising funds for my 4 month old granddaughter, Zaelah Jayms.

Zaelah was born prematurely when her mother's amniotic fluid slow-leaked and an emergency C-section had to be performed- she was 2lbs 5oz at birth.

Like any premie, doctors were concerned about her weight and general health. Zaelah was placed in the Neonatal Intensive Care (NICU) immediately after her birth. Although she was small, she was able to breathe on her own and needed none of the additional assistance that premies often required. Doctors were amazed at her resilient attitude. Due to her size, the hospital she was born in was unable to care for her, so she was transfered to Phoenix Children's Hospital (PCH), which was better equipped to care for a baby her size. PCH was an hour drive each way for her mother (Jzendra) and siblings to visit her.

Shortly after being admitted to Phoenix Children's Hospital, Zaelah began showing signs of jaundice and was unable to maintain blood sugar levels. Her numbers would be in the normal range for days at at a time, then she would develop random and sudden breathing issues, stomach bloating, and bloody stools. Her Dr's quickly realized something was wrong and they began to run tests in order to find the problem. Based on her test results, Zaelah was diagnosed with a rare liver disease called GALD.

GALD occurs in the womb when the mother's antibodies attack fetal hepatocytes. The baby's body has an autoimmune response, and causes subsequent damage to the baby's liver. The survival rate for babies with this disease is very low. Ordinarily, by the time GALD is diagnosed, 80% of the babies are either dying or dead. After Zaelah's diagnosis, Dr's met with Jzendra to discuss hospice care so Zaelah would be allowed to die at home, with family. But... Jzendra is tenacious and Zaelah is her mother's daughter!

Jzendra, advocating for her tiny new baby began researching on her own and believed that her breast milk may be exacerbating the issue. Dr's quickly dismissed Jzendra's hypothesis. Meanwhile, Zaelah had frequent stomach bleeds and full-body bloating. Finally, after much push-back, the medical staff tried switching Zaelah to donor milk. Her jaundice greatly improved and Zaelah's liver was actually HEALING! Unfortunately, this is where things get complicated.

Zaelah had been assigned an entire team to navigate her various medical needs and emergency events. After switching Zaelah to donor milk, her numbers were improving and her liver was slowly healing. The medical team began supplementing the donor milk with formula. She responded well, so long as the changes took place over time.

Zaelah's progress was slow & steady. At least one doctor was concerned about her slow growth rate. In order to speed-up the rate of weight gain, a supplemental medication was administered that was specifically designed to help her put on weight. Within a few days, the bleeds and bloating returned and Zaelah was unable to breath on her own.

Again, Jzendra stepped up. Advocating for her daughter, she emphatically protested against the supplement, urging the Dr's to allow Zaelah to grow at her own pace, while only making incremental and carefully monitored changes. The Dr's attempts to persuade Jzendra that the supplement was not the proximate cause of the recent adverse conditions didn't sufficiently sway this educated and tenacious young mom. Jzendra believed that her daughter's degradation was somehow connected to the supplement.

Against Jzendra's wishes, one doctor ignored the demand to halt the supplement schedule. The doctor worked with the staff nutritionist, and increased Zaelah's supplement dosage. Zaelah, who had only weeks before been on the road to healing, was no longer improving; in fact, she was getting worse. Jzendra, immediately began research on the supplement, trying to make sense of what was happening to her daughter. During her research, Jzendra found a public report that listed "liver damage" as one of the supplement's more common side effects.

Within 10 days, Zaelah went from being the miracle baby on her way home from the NICU to a very sick little girl, too lifeless to even cry. To make matters worse, the constant feeding line in Zaelah's leg caused bruising, and a blood clot formed. Her medical team was justifiably concerned about the clot dislodging and making its way to her heart. Once again, Zaelah was fighting for her life. The feeding line was absolutely necessary. Without it, she would not survive. Jzendra would not agree to put the line in Zaelah's other leg for fear of the same thing happening. Because Zaelah already had so many lines going into her body, the last place the feeding line could go was into her head. A little 4lb baby with a tube and a tap coming out of her HEAD was a horrifying and tear-tugging sight! Jzendra would not allow her older kids to visit and hold their sister because she was concerned about the trauma that may follow.

Zaelah's bleeds and bloating episodes became commonplace. Her swollen liver was visible by looking at her belly and she would wince whenever anyone touched her stomach. After another meeting with the medical team, Jzendra insisted on an MRI to check Zaelah's liver. The team refused her request. Jzendra urged again and again, and finally, one Dr agreed. The MRI results? Irreparable liver damage. Not only was Zaelah's liver beyond the possibility of healing on its own, but it was deteriorating at an aggressive rate. She needed a liver transplant as soon as possible! The problem? She was too small. At the time of discovery, Zaelah was only 4 lbs. Because of the damage to her liver, she had to stop taking a bottle and was forced to obtain ALL of her nutritional needs from the supplement that, arguably, exacerbated the liver damage in the first place. In order to be eligible for the donor list for a liver transplant, Zaelah needed to reach 9 lbs.

That brings us to the GoFundMe here. Jzendra and a Social Worker worked with a liver Dr at PCH. That doctor reached out to hospitals all over the U.S. to find a hospital that would take Zaelah's case. They needed to find someplace she could go to get a liver transplant immediately. Zaelah recently hit the 6 lb. mark. She is now exclusively dependent on the supplement for all her nutritional needs. Her liver is not likely to make it long enough to allow her to reach 9 lbs.

One hospital agreed to take Zaelah and she would be immediately placed on the donor list upon her arrival. The hospital is in Cincinnati, Ohio. They do liver transplants on babies as small as 6 lbs! Once her health insurance is squared away, Zaelah and Jzendra will be flown with a medical team on a private plane to Ohio. This should hopefully occur within the next week or so.

Jzendra has 3 other children. They are 13, 10, and 2 years old. The older kids are still in school. Jzendra will have to leave her 3 older kids and move to Cincinnati while she waits for Zaelah to receive a liver. Jzendra is a business owner and will need to reduce or stop her business operations, while also traveling back and forth from Arizona, where she lives, to Ohio where her baby will be.

I am asking for donations on behalf of my daughter, Jzendra, and my granddaughter, Zaelah. As a mother, I feel totally helpless in this situation. I can't begin to imagine how Jzendra feels as a mother, unable to help her baby while also dealing with the possibility of losing her baby to liver failure. Jzendra has traveled an hour each way to visit Zaelah 5-7 days a week since January. This is on top of juggling sports, school, and extracurricular activities for her tweenagers, and caring for her 2-year-old son who does not attend daycare. If anyone deserves support, it's THIS woman! This is not a contest or flex situation. ANYTHING you contribute will be truly appreciated and responsibly applied.

Thanks for reading Zaelah's story. We will do our best to keep everyone updated on her situation. ❤️