Baby's condition has parents on edgeSunday, July 25, 2021
BY ROMARDO LYONS
Worried and uncomfortable, Kasandra Howell and Fred Caine sought repeated medical advice for their newborn son, Frejaun Caine; whom they suspected wasn't breathing properly.
Through a friend, health workers from a clinic visited their home twice to inspect the baby and found nothing out of the ordinary. Later, at the baby's first clinic appointment, his parents were again told that everything was fine. Still concerned, they took Frejaun to a private doctor who, like everyone before him, said everything was fine and dandy.
But during his second clinic appointment on July 1, he was noted to have poor weight gain and difficulty breathing. Frejaun, three months old, was then referred to the Mandeville Regional Hospital. He was assessed as “likely congenital heart disease, failure to thrive and to rule out sepsis”
The following day, after being admitted, an echocardiogram — a test that graphically outlines the heart's movement — was done, and the boy was diagnosed with hypoplastic left heart syndrome (HLHS), a birth defect that affects normal blood flow through the heart.
“At first when I brought him home, I noticed that he was breathing heavy. So, I asked doctors why he was breathing so heavy and they said that's how a newborn baby breathes. I still didn't feel good about it because it really didn't look normal. But because they are in the medical field, I kinda trust what they say,” Howell, the boy's mother told the Jamaica Observer.
Caine, the boy's father, detailed the extent to which they went to ensure that their baby was healthy.
“I was overly concerned so I asked my nurse friend about it and she sent some health workers to the house and they looked at the baby. They said that is how newborns breathe. They came to the house twice and they said he was fine. Then he went to his first clinic and they said breathing and everything is fine with the baby. The private doctor that we took him to when he was teething, we asked if everything good with the baby and he checked him and said everything fine,” he recalled.
A copy of a document obtained, which bears the letter head of the South East Regional Health Authority (SERHA) and the seal of the Health Records Unit at the Bustamante Hospital for Children, says: “Frejaun was delivered at term and was thought to be well immediately after birth. After his discharge, his mother thought he was short of breath, but was advised that his breathing was normal. There were no concerns voiced at his routine clinic visits. There was no sweating with feeds, no heart racing, and his weight gain was thought to be adequate by parents.”
He was further described as a small male infant in moderate respiratory distress, being medicated with Furosemide and Spirinolactone.
There was no alarm, both parents said, until Frejaun's second visit to the clinic.
“He never got sick or anything. The only thing is that we thought he was teething, so we went to the doctor with him and he got teething medicine. After that, I took him to the clinic and the nurse looked at his abdomen and said he's not breathing normal. So she sent me straight to the hospital. He went on oxygen the same day because his oxygen level was low,” Howell related.
Howell told the Sunday Observer that since the diagnosis, her world has flipped upside down.
“That's when they found out. He's my first child. It rough bad! It's very rough. To know I waited so long and this is happening, it's rough. I break down every day. And I am at the hospital every day. I think it's only one time I went home and I did not sleep. I can't leave. I just can't leave him. My mind is all over the place. I call him my miracle baby because for a newborn to be surviving even up until now!
“When I went to the hospital he was just three months, and for a newborn to survive with such a condition… we have a full heart and he has half. He's fighting. He's a miracle baby. I did some reading and normally, babies with that disease survive only two days after birth. He wasn't getting any medication,” she said.
Frejaun was referred to Bustamante Hospital for Children for a repeat echocardiogram which confirmed the diagnosis. Meanwhile, the distressed father told the Sunday Observer that he has never heard of that condition.
“This is the first time that I am hearing about it. The doctors here said they can't do anything. That's why we're pushing to get him overseas. We have reached out to Evelina London Children's Hospital. My son's uncle who is over there contacted them and they asked for referrals from here, which was sent to them. We paid for it and they sent it over last week Friday. So, we are waiting on an answer from them as to what cost it's going to be.”
When contacted by the Sunday Observer, Alwin Miller, CEO of Mandeville Regional Hospital, confirmed that the parents paid for a referral which was already sent to Evelina London Children's Hospital. It was decided that the child was not a candidate for surgical intervention locally.
While the anxious parents wait on a response from the Evelina London Children's Hospital regarding admission and cost, Caine said he was up to his neck in worry.
“Right now, I am stressed. I wanted to go down the hospital and I can't go because of my job situation,” he said on Monday. “We had to be sleeping on chairs in the hospital. We take turns to sleep during the night. So, while one is attending to the baby, one takes a little nap and then the other has to get up again. It's really tough.”
And having to cover bills and other necessities for his son's health, he has been plunged into a financial drought.
“I have to be up and down. I do driving school in Spaulding and I am not getting any calls from clients. I teach people to drive, but for the past weeks… I haven't been getting any calls at all. I don't know if it's because of this situation why people probably think seh mi back down. I haven't been getting any calls, so financially, I'm down. It' a whole lot of pressure. The money is not coming in like before,” said Caine.
Upon research, the family was informed that the last treatment done for HLHS was in 2016, and the first surgery was valued at US$51,000.
“There are three surgeries to be done and it was US$51,000 for the first surgery alone. You can just imagine what the cost will be after all this time. We are just trying to get a response from the hospital for the actual cost,” Caine said.
In the meantime, the family has launched a GoFundMe account as they plead with Jamaicans to assist their son in getting the urgent treatment he requires.
Anyone wishing to help can make a donation at https://www.gofundme.com/f/life-saving-surgery-for-kyle/donate or make a donation to the following account:
NCB Account#: 854394762
Now you can read the Jamaica Observer ePaper anytime, anywhere. The Jamaica Observer ePaper is available to you at home or at work, and is the same edition as the printed copy available at https://bit.ly/epaper-login