Baby’s family in medicine battle
AT JUST three weeks old, tiny Lucas Almeida stopped breathing.
His mother Monica, a trained nurse, saved his life by giving him CPR until the ambulance arrived.
Now aged nine weeks, Lucas has been diagnosed with silent reflux.
The condition causes him to choke after feeding as he is stricken with the pain of the acid making its way up.
Not only do his family now live in constant fear of him stopping breathing again, they have had to fight for medication to ease their baby’s pain.
“It was a terrifying thing to go through. Now I’m constantly checking if he’s breathing and his dad doesn’t dare feed him as he chokes and he is scared it might happen again,” said Monica Almeida, 28.
After a brief stay at Lincoln County Hospital, Lucas was discharged with just some Gaviscon to relieve his symptoms.
When it made him sick, Monica started looking for alternatives. She found out about Omeprazole, which does not stop the reflux, but reduces the acid in the stomach.
“Paediatricians in Lincoln prescribed the Omeprazole, but my surgery was unable to prescribe the liquid form as it is not on the list of authorised medications to be routinely prescribed for babies,” she said.
“Lucas was given soluble granules instead which he struggles to swallow and he is not having the correct dosage as he spits half of it out.”
“I happen to know the tablets and granules are not meant to be prescribed to babies either, so the only other reason I can think for them to refuse it is the cost.”
“There shouldn’t be a price on a child’s health.”
Monica was told they needed ‘approval from the board’ before the medicine was prescribed.
Omeprazole can cost more than £160 for 75ml in liquid form, while the capsules are just £1.44 for 28.
It took a second opinion from a paediatrician in Scunthorpe before the liquid was finally prescribed by the surgery a month later.
“I was phoning daily trying to get an answer, all the time my baby is suffering with this condition which is distressing for all of us,” she said.
Now, having had the liquid approved on a trial basis, the family are angry it has taken so long.
“I don’t think it was taken seriously ever since we were discharged from hospital,” said Monica.
“I’ve had conflicting messages from different GPs at the surgery. One agreed Lucas needed Omeprazole, another didn’t.”
“It worries me that GPs are to be given control over their budgets if they can’t agree what is best for my baby.”
“What happens if their budget is running low? Will they stop prescribing the most expensive medication?”
Lucas’ dad Artur said: “It should not be this hard for us to get the medicine our baby needs.”
“We work hard and pay our taxes so we should have full access to the NHS.”
Monica now wants to raise awareness, so that other parents don’t have to go through what she has.
She said: “I honestly think if I wasn’t a nurse, and I had not pushed so hard, Lucas would not have got it.”
NHS Lincolnshire said it could not comment on individual cases, but said Omeprazole liquid was not the first choice for doctors to prescribe to babies because it was unlicensed for such use.
“We recognise that prescribing for infants and children is particularly complex and may necessitate the consideration of a wider range of licensed and unlicensed alternatives than may be necessary for adults,” said a spokesman.
“The NHS has a duty to ensure that the use of unlicensed specially manufactured products is confined to appropriate patients only.”
“And prescribers have a duty to follow the regulations when prescribing medication to ensure the safety of the patient.”
They added that guidance for GPs on the use of unlicensed ‘special’ medicines was due to be updated this summer.
“We try to agree standard policy on as many issues as we can in Lincolnshire to reduce this kind of variation in advice.”