A grandmother in Belfast spoke of her seven-month-old granddaughter suffering from brain damage and other difficult needs.
Baby Arya was born on September 18, 2021, and due to complications during childbirth, the family was told to “prepare for the worst” because she was not breathing at first.
He was diagnosed with neonatal hypoxic-ischemic encephalopathy – a type of brain damage caused by a lack of oxygen – as well as cerebral palsy, dystonia, epilepsy and other complex needs.
Aria spent the first seven months of her life in the hospital and was unable to meet many members of her family. During this period, he also contracted two attacks from the Corona virus and pneumonia.
Her grandmother, Caroline MacKenzie, told Belfast Live how long Arya lived so far.
“On September 18, around 8:30 a.m., I got to my daughter’s house when she called me and told me she thought she was giving birth, it was so painful,” Caroline explained.
“When Jenna started giving birth to her first child, she was already in the hospital, but she had no contractions or labor pains.
“I took him to my house to follow him. At 10:30 in the morning he went to take a shower, then at 11:30 he went out to go to the bathroom and the water overflowed. I called the hospital and they advised me to call. Emergency. “Everything seemed to be going really fast from the moment the water went off.”
An ambulance worker spoke on the phone to Caroline about the steps she needs to take to help her daughter Jane and she stayed on the phone until the ambulance arrived.
(Photo: Caroline McNeese)
Caroline said: “The baby was born without breathing, 44 minutes passed before he breathed for the first time. Finally we got into the ambulance and he was resuscitated.
“My daughter was told to prepare for the worst, that the child would not breathe, they thought he was dead.
“He has been diagnosed with brain damage, secondary to which he also suffers from cerebral palsy, epilepsy and dystonia. He has no swallowing and is therefore drip-fed. He recently underwent his first surgery to have a feeding tube inserted into his stomach.”
Caroline is trained with Arya’s other grandparents and her parents to learn how to take medicines and absorb her secretions.
Since his birth, the young man has not met many members of his family.
“He’s about seven months old and he’s not home at the moment, he’s in the hospital constantly,” Caroline said.
“The baby had never met his family. We took her stroller, so we were able to walk to the hospital, so we showed her to one or two family members, but no one was physically able to come in and get to know the baby.”
(Photo: Caroline McNeese)
Aria’s diagnosis affected the family, mother Gina was unable to return to work as a caregiver, and her three-year-old brother also suffered.
Caroline said, “The whole family has been hurt, it is so awful. I have never felt such pressure in my life. I have had psoriasis due to stress.
“When Jenna was born, she had to quit her job and only God knows if she could come back, she probably never would. In the hospital every day.
He also has a three-year-old son he can never see. It is difficult for him to take care of himself in kindergarten.
“I’m not working alone now and making direct payments to be a full-time Aria caregiver. My job is to take a break from Jane and spend time with her. My son is too. But it never seems to end.”
Caroline, who described her niece as a “warrior princess,” said they are trying to get her specialized equipment to support her as much as possible.
“I’m doing my best to get the help he needs,” he added.
(Photo: Caroline McNeese)
“I try to help Jenna with the things she needs. Because of her dystonia, Aria will need appropriate chairs to sit on to help reduce her seizures.
“They each cost 2000 2000 and that is not something that a person cannot turn their life upside down. I want to try to do everything possible to help.
“I feel a special relationship with the baby, obviously a grandmother, but also because I helped her give birth. I felt like I couldn’t do anything to help her, I feel a little guilty, everything is going my way. I wonder if I could have done something different.”
The family raises funds to acquire specialized equipment to help Aria evolve.
You can learn more and donate to raise funds by clicking here.
Source: Belfastlive
I’m an experienced news author and editor based in New York City. I specialize in covering healthcare news stories for Today Times Live, helping to keep readers informed on the latest developments related to the industry. I have a deep understanding of medical topics, including emerging treatments and drugs, the changing laws that regulate healthcare providers, and other matters that affect public health.
