By Klysha Best
Nothing can be more traumatic for a mother than to lose a child. When that child is mere months old, the suffering and scale of emotions may seem unfathomable.
However, 29-year-old Misilla Prime of South Trinidad is pushing through her loss and encouraging moms in her situation to do the same and lean on God.
Prime gave birth to her son Deangelo Declan Prime on October 17, 2021. He passed in March of this year.
Telling her story to Catholic News, Prime recalled how she and her husband Denzel Prime, who have been married for three years, struggled at first to have a baby, due to her fibroids. But being a prayer warrior as she described herself, they were eventually blessed with the news of a child.
Prime revealed that her pregnancy was a relatively normal one, in the beginning. Labour, she stated, was another story. According to Prime, she was in excruciating pain and spent 24 hours in labour. She was told she should have a Cesarean section, but as Prime tells it: “I don’t know where I got the strength from, I was able to push him out.”
DeAngelo came into the world with a bit of yellow in his eyes – a sign of jaundice and Prime said at that time, she was told that it was just in the corner of his eyes and that she should expose him to sunlight.
“We kept putting him in the sun when he came out of hospital, and it started to go away at first and then it returned and kept fluctuating,” she noted.
When DeAngelo approached the three-month mark and was taken for his first series of vaccinations, Prime said his eyes were completely yellow that day, but the nurse attempted to comfort her by saying all she needed to do was “just keep breastfeeding him”.
This, however, was an issue for Prime, as her body was not producing the necessary milk and she was convinced that this was the reason for her son’s health status.
“I started drinking and eating all sorts of things to get my breast milk to come in, but to no avail,” she said. Eventually, on the advice of a friend, Prime decided to take DeAngelo to a private pediatrician, who advised that a blood test was needed.
This they did, and when the results returned, Prime said “Everything that was not supposed to be high came back extremely high – his white blood cells were high, the bilirubin level (the cause of jaundice) was 10 times the amount it was supposed to be, and I was told to take him to the hospital immediately.”
“We spent about a week, from Old Year’s Day, then they discharged him because they said he was stable. He was eating, he was putting on weight. He was doing everything that a normal baby would do at that age. The only issue was that his eyes were extremely yellow,” said Prime.
The family was then told that they would need a hepatobiliary iminodiacetic acid (HIDA) scan, an imaging procedure used to diagnose problems of the liver, gallbladder, and bile ducts. For a HIDA scan, a radioactive tracer is injected into a vein in your arm.
“This HIDA scan was costly,” said Prime. “But we had to find the money to pay for it…which was another issue.” She said, “When we were ready with the money to have the scan done, the place we were using said they didn’t have the specific dye needed to do the scan and needed to order it and that took two weeks. When it did arrive, it got damaged in transit, and we had to wait another two weeks for the scan to be completed.”
Initially, the scan revealed that DeAngelo had Bilaria Atresia, a condition in infants in which the bile ducts outside and inside the liver are scarred and blocked. Bile can’t flow into the intestine, so bile builds up in the liver and damages it. The damage leads to scarring, loss of liver tissue and function, and cirrhosis.
“The hospital told us they get one in every four years and unfortunately, my son was one of four,” Prime stated. The surgery for biliary atresia is called the Kasai procedure. During this surgery, the surgeon removes any problem bile ducts outside the liver. The small intestine is then attached to the liver. This provides a path that can allow bile to drain from the liver.
Prime said, “When they did the Kasai procedure, they found that it was not in fact bilaria artesia, which was a good thing and they just had to take out his gallbladder.
“However, while doing the surgery, doctors realised that DeAngelo’s liver was already damaged, as all the bile was storing up, and was not leaving the way it was supposed to.”
A liver biopsy was done and when the results returned, Prime said it was even worse than they thought. DeAngelo had cirrhosis/cirrhotic liver.
Cirrhosis is a late-stage liver disease in which healthy liver tissue is replaced with scar tissue and the liver is permanently damaged. Scar tissue keeps your liver from working properly.
Prime said they spent every waking day in hospital with him following surgery and were raising funds to take him to Argentina for another surgery.
Sadly, DeAngelo passed away on March 3, 2022, at 11.35a.m.
Cause of death was liver cirrhosis among other things, as Prime said his lungs and brain began bleeding.
Pushing on through the pain, Prime said she now wants to give back in her son’s honour.
“We had an account number that people were donating too and that came up to $10,000 and we also had a GoFundMe account, which came up to $35,000. We had people who handed us money in our hands and who gave to my parents and my husband’s parents. So, all in all, we raised around $50,000.”
Prime said she and her husband have decided to use some of that money to purchase supplies for the pediatric surgical ward and the medical ward of the San Fernando Teaching Hospital.
“We wanted to do this because the doctors there did a lot for my child. They did everything that they could for him.”
She added, “He was supposed to be in the ICU, but Sando ICU had no space, Mt Hope’s ICU had no space, and he wasn’t stable enough to be able to travel, so what they did was create a whole entire ICU for him.”
“They brought down oxygen tanks, they moved people out of the room, and he had 24-hour care. The surgical doctors came out even when they were not on call to see about him, so they did their best,” recalled Prime.
She said some of the money was used on funeral expenses, but she pointed out that during DeAngelo’s time in hospital, there were a number of things he needed that the hospital did not have access to at the time. She hopes purchasing the necessary supplies for the hospital could help someone else’s baby.
Prime said, “When he was in hospital, at first, I was asking God to heal my son. But then I realised that every time I asked God to heal him, he would get better for a few days and then go back to doing poorly.
So, then I said to myself, maybe this isn’t what God wants me to ask, so I changed my prayer to ‘Let God’s will be done’ and that is when things took a turn for the worst.”
“It was hard watching my son suffer. My husband and I, we sat down and spoke and said it doesn’t make sense that he is suffering so much, and it doesn’t make sense to keep him here. We decided to speak to DeAngelo and tell him if he needs to go, he needs to go and we will always love him,” Prime revealed.
“What’s keeping me through this ordeal is knowing that he is in a better place. He was able to get baptised before the surgery and they say you’re born into original sin and when you’re baptised, you’re cleansed from original sin, so to me, knowing that he went straight to Heaven, sure pass – that is what keeps me going most days.”
“I miss him a lot, some days I cry, some days I can’t function, but most days, I am able to push through, because I know that he is in a better place,” she said.
To mothers going through anything remotely similar, Prime said “Lean on God. He’s the only one who knows what you are feeling.”
“I used to say the rosary every day and always call on Mother Mary. This is what she went through when she saw her son Jesus suffering while carrying the cross and being nailed to it. That is how I felt, so I understood how she felt, and I lean on her a lot.”
Prime said, “There were days I did not know how to pray or what to say and all I did was play gospel music in his hospital room. The nurses would tell me I was ministering to their souls. That made me feel good, knowing that I was making an impact, even during my feelings of hopelessness.”
Since he has passed, Prime admits that it has been a tough time. “I have not stopped praying and I always ask God to give me the strength to go through the day. I don’t ask God to take away the pain, because I don’t want the pain to go, I want to be able to feel it all, but I want to be able to push through the pain and continue on.”