'Our son was ill and we felt dismissed as worrying new parents'

When Becca and Harvey first raised concerns over their newborn son's rash, they said they felt dismissed by healthcare workers as "worrying new parents".

Their son Roman, who was born in July, had become increasingly unwell during his first few weeks of life, with the couple describing him as swelling, "screaming for hours" and "clawing at his own face".

Becca and Harvey, from Ipswich, said they repeatedly sought medical advice and were reassured by medics that his symptoms were normal or attributed to conditions such as baby acne.

In September, two months after his symptoms first appeared, Roman was diagnosed with a cow's milk protein allergy (CMPA).

"We felt brushed off, but he'd been to hospital more times in two months than I have in my entire life. If we hadn't been so persistent, he'd still be ill now," Becca said.

Harvey, 27, said: "After two weeks [from his birth], we noticed he was getting rashes and hives after his bottle.

"He'd become irritated, clawing at his face, leaving scratches even with mittens on.

"We initially thought it was just all part of having a newborn, their skin becoming used to their surroundings. We quickly realised it wasn't that."

CMPA can be life-threatening and Allergy UK said 2% to 3% of children have the condition, making it the most common food allergy in childhood.

The charity said cow's milk was responsible for more than a quarter of fatal food-anaphylaxis cases in children.

Dr John Chapman, a consultant paediatrician at the James Paget Hospital in Great Yarmouth, Norfolk, said the allergy can be difficult to diagnose and doctors often rely on symptoms and parents' accounts.

"Only about one in 10 babies with a milk allergy will have a positive allergy test. That means nine out of 10 are diagnosed from their history and the story parents give you, which makes it difficult," he added.

The couple said Roman became increasingly distressed after feeds, and they began questioning whether they were overreacting, despite feeling sure something was wrong.

"Whoever you go and see, they will ask if you are a first-time parent," said Harvey.

Becca, 29, added: "A lot of the time it's followed with, 'it's normal' or 'first-time parents are overprotective', and you're told you're worrying too much.

"Even on our third GP visit, we listed all his symptoms. The scratching, blood in his poo and continuous crying.

"A CMPA symptom is losing weight, but Roman was gaining weight, so we were told he was OK when we knew he wasn't."

After noticing periods where Roman appeared to stop breathing, Becca called NHS 111.

After paramedics found his oxygen levels dropped when he lay flat. He was initially diagnosed with silent reflux and prescribed medication, but his symptoms continued to worsen and he began to develop hives and have diarrhoea and feeding difficulties.

Becca said seeing her newborn in an ambulance was the "hardest time of our lives".

"He was so swollen and there was nothing that we could do to fix it. It was really hard. In fact, it was hell," she said.

The couple began to research Roman's symptoms and found them to match those for CMPA.

In September Roman reacted badly to a hypoallergenic formula and was taken to the children's assessment unit at Ipswich Hospital, where doctors diagnosed him with CMPA.

Becca said receiving the diagnosis felt like a "weight had been lifted" off her, with Harvey adding: "To have that CMPA diagnosis, and know we weren't overreacting, was a huge relief."

After Becca shared Roman's story on TikTok, hundreds of other parents responded with similar experiences of living with CMPA.

The couple have since launched a petition calling for mandatory CMPA training and specialist referral pathways in primary care, which Harvey said would help similar families.

"It seems there's a gap in knowledge. We believe there could be more specialised training in primary care to build awareness and understanding of the allergy.

"That would go a long way towards helping families in the future and empowering them to advocate for their children.

"Roman can't talk. We need to be his voice."

Chapman, a consultant paediatrician, said: "I think GPs have got a lot better at diagnosing milk allergy.

"I would always support increased education for general practitioners, who have very difficult jobs. I don't think there is one thing you could do to help them recognise it.

"GPs need to spot unusual or unexplained symptoms and not brush them off. They must think: 'Could this be a milk allergy?'"

A spokesperson for the Department of Health and Social Care said: "We know living with an allergy can be frightening for children and their families.

"We are committed to improving care and support for people with allergies and are working closely with NHS England, clinicians and experts, including the National Allergy Strategy Group, to consider how services can be strengthened and patient outcomes improved."

Do you have a story suggestion for Suffolk? Contact us below.

Follow Suffolk news on BBC Sounds, Facebook, Instagram and X.