A UK mom shared a heartbreaking warning to other parents after her seemingly “perfect” and healthy baby who never cried turned out to have a fatal genetic disorder.
Laura Dinnen, 29, never imagined her baby boy Roman’s “chilled-out” disposition would turn out to be a symptom of a deadly metabolic disorder, which took his life just days after he was born in April.
The mother of one, who has a 4-year-old daughter, Erin, with her husband, Andrew, 34, enjoyed a stress-free pregnancy and birth and believed they’d struck lucky with a quiet and relaxed newborn who wouldn’t cry when he was put down or had his diaper changed.
Initially, she thought she was just being a paranoid parent when she first suspected it could mean something more sinister but later realized that something was seriously wrong when the infant went off his food.
“I just thought I was being a paranoid parent but it turned out I wasn’t,“ said Laura, a project assistant from Acomb, York. ”Originally I didn’t want to take him to A&E because I thought we just had a great baby who was just really chilled out.
“Normally a baby will scream whenever you put them down or will cry when you change their nappy but Roman didn’t do any of that,” she added. “You would put him down in his Moses basket and he would just be very calm and would seem absolutely fine.
“At first we didn’t think anything of it but then his feeding started to drop and it got to the point where he was taking less than one ounce of milk.”
Roman was born in the early hours of the morning on Monday, April 6, and after everything had gone successfully, the family were discharged and sent home later that day.
But just two days later, Laura began to suspect that something wasn’t right and decided she would wait until the following day to flag her concerns with her midwife.
However, through the night, she became more concerned with Roman’s condition and took him to York Hospital A&E in the early hours of the morning, but they were soon transferred to a specialist team at Leeds General Infirmary.
After further tests in Leeds, the family’s worst fears were confirmed—that Roman had an unnamed rare metabolic disorder that would be life-limiting, and even with grueling treatment and procedures, his chances of survival were lower than 1 percent.
“It was a perfectly healthy pregnancy, there were no tell-tale signs of that anything was wrong and the birth all went to plan,” Laura said. “We got home at lunchtime after he was born at 4 am in the morning that day and he seemed perfectly fine.
“It was only a few days later that I thought something wasn’t right when he’d been sick after his feed and I realized his feeding had kept dropping to the point where he would only drink less than one ounce of milk.
“We asked the doctors what are the chances of Roman coming through this and being a perfectly healthy baby and it was less than a 1 percent chance.
“It was a choice between letting him go or putting him through agonizing procedures to try and extend his life, but the chances of his survival were so low it didn’t seem fair to put him through that.
“It’s a decision that no parent should ever have to go through.”
After making the heart-wrenching decision to discharge Roman and move him to Martin House Children’s Hospice in Boston Spa, West Yorks, the family were able to spend some precious final moments with their baby boy before he passed just after 9 p.m. on Friday, April 10.
Due to lockdown restrictions at the time of his death, the family could only have five people at Roman’s funeral and were unable to have a wake after the graveside service or even see friends and family for support.
Now, the family is planning to hold a full memorial day for all those who never met Roman or got to say goodbye, after the tragic tot was robbed of his funeral.
Laura added: “We got this baby boy that we never thought we would have because we were convinced that we are having another girl.
“I’d never want anybody else to ever have to go through this and I would tell any mother or father to trust their parental instinct, because even though nothing could be done for Roman it just goes to show how small the signs can be that something serious is wrong.”
