Sun | Jul 15, 2018

Hailey’s horror! - Family needs $31m to save the life of baby born with rare genetic disorder

Published:Sunday | February 18, 2018 | 12:13 AM
Little Hailey at one day old before she was diagnosed with a rare genetic disorder.
Sanika Splatt
Sanika Splatt (left) is consoled by her mother Donna Moxie.
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READ: Hailey Baker Dies - One-Month-Old With Rare Genetic Disorder Succumbs In Hospital

 


January 16 was a day of celebration for Sanika Splatt as she gave birth to a daughter she named Hailey Baker, but her joy was short-lived as it was soon discovered that Hailey was born with a rare genetic disorder and had to be placed on a life support machine.

Hailey is now off the life support machine but remains in the special care nursery at the University Hospital of the West Indies (UHWI), having been diagnosed with an inborn error of metabolism.

The condition is a rare genetic disorder which prevents her body from properly turning food into energy, and the hospital has informed that it cannot be treated locally.

The family will have to find $31 million to secure the necessary treatment in the United States.

“She is breathing with distress,” Sanika told The Sunday Gleaner. “Her liver is swollen and she is bringing up the bile from the stomach. She also has a hard time staying awake,” said Sanika of her only child.

Hailey’s last feeding was more than 30 days ago as she can only consume a special formula which is not sold locally. Her mother has since been able to source the formula online at a cost of US $225, and family members from overseas are expected to take it to Jamaica today.

Hailey appeared normal after birth and she was released from the hospital a day after delivery, but Sanika realised that she wasn’t breathing properly four days later, following a breastfeeding session.
The doctors initially thought she had a nasal problem and Hailey was nebulised, but still she continued to have issues with her breathing. A blood test that was done overseas revealed that she had the rare genetic condition.

Hailey’s grandmother, Donna Moxie, said that UHWI has tried to assist them by connecting them to the Nicklaus Children’s Hospital in Miami, Florida, which can provide the necessary treatment.

In a letter from the hospital and addressed to the Ministry of Health, it was outlined that Hailey had been admitted since January 20 and remains quite ill although they were able to stabilise her with aggressive management.

“Her condition was critical, requiring fluid resuscitation and eventually ventilator support,” the hospital wrote.

An pro forma invoice from Nicklaus Children’s Hospital shows that it will cost the family a little over US$193,000, or approximately J$25 million, to treat Hailey.

Due to her condition, she will not be able to travel on a commercial aeroplane and so the family will have to charter an air ambulance to transport her. This will cost an additional US$50,000, or J$6 million.

“We not even have the first million,” said Hailey’s distressed grandmother, Donna Moxie.

“It would be sad to see this little baby lose her life because we don’t have the money,” added Moxie.

The family will need to make a down payment at the hospital before Hailey can be admitted, and a worried grandmother said, “The longer she stays here (UHWI) is the worse she is going to get. They say they can’t treat her, and this is going to be the fifth week now that she is here.”

Sanika had an interview at the United States Embassy on Friday in order to secure a visa to take Hailey overseas for treatment; however she was given a pink slip because she was unable to prove that she would be able to pay for the treatment.

The family has written several letters to corporate entities and they have also set up a GoFundMe account in the name of Hailey Baker.

A Hailey Baker medical fund has also been was set up at the National Commercial Bank. The account number is 404331418. The GoFundMe account, which was established last Wednesday, has managed to raise a little over US$500 so far.

Moxie is not only worried for her granddaughter, she is also concerned about her daughter, who has been living at the hospital to be closer to her baby.

"My daughter is taking it so hard. I just pray that she is OK and her blood pressure doesn't go up," said Moxie.

"The nurses are worried now about her getting postpartum depression because from she gave birth, her whole mind is not settled. Whenever she goes home she cries," added Moxie.

nadine.wilson@gleanerjm.com