We as parents are the experts in knowing our children

When Lottie King’s son Oska was six months old, having spent the first four months of his life in neonatal intensive care, she took him back to hospital after he had to be resuscitated at home.

“While I’d had a brilliant experience on the neonatal ward, this was very different. I wasn’t listened to and was actually told to stop treating him like a premature baby, he’s a big boy now,” says Lottie.

“The consultant came in and told me to turn of the SATS monitor as I was fixated. As his mum I knew something was wrong, I had spent so much time in the neonatal ward learning everything about him, but they wanted to discharge him with iron tablets as they said he was anaemic. They hadn’t checked Oska’s medical records, they just dismissed me.”

By chance, one of Oska’s neonatal nurses came to the ward, and recognised that something was wrong. Having checked his medical notes, it transpired that a urine test taken a few days previously contained bacteria. A subsequent CRP test revealed a dangerously high level of infection.

Oska was diagnosed with sepsis – meaning he was hours away from death. Although this was around 10 years ago, and Oska happily fully recovered, Lottie still recalls the episode with dread.

“The whole experience filled me with fear and panic, and if it wasn’t for that nurse coming to the ward, which was a complete coincidence, Oska would have died,” she says.

“It left me with a feeling that I didn’t trust anyone to look after my son. I had been dismissed as a hysterical mother who was made to feel like I was just being dramatic, when in fact I was absolutely right. I knew my son better than anyone, but no one would listen to me.”

Sadly, such instances are all too familiar. Lottie is chief executive of Leo’s Neonatal – a charity, named after Oska’s twin brother Leo who died before birth, which supports the mental wellbeing of neonatal families. In her role, she sees the same themes of parents not being listened to occur time and again.

“I hear the same thing routinely, that parents are being dismissed by medical staff

who think they know better than the parents – and while in terms of medical training,

they are more qualified, but what they need to remember is that we as

parents are the experts in our own children,” she says.

“We don’t want parents being made to feel inferior or like their concerns don’t matter,

because then they might not come forward when something is seriously wrong,

because previously they have been dismissed.

“And then that almost becomes a safeguarding issue – why haven’t you sought the medical help your child needs? Parents can be very damaged by the way they are treated.

“It's important to work as a team, bring that unique knowledge of the parent and the medical training of nurses and doctors together to work as a united front."

While many medical professionals are wholly supportive, for those who are too quick

to dismiss parents’ concerns, Lottie is keen to stress the need for greater

compassion.

“We know how busy hospitals are, and you can see that some staff are really

struggling and on the verge of being burnt out, but we need to be mindful of the

situation of parents too,” she says.

“These parents, especially those who have been on a NICU, have a child with complex needs or have experienced loss, often move into a trauma state, and in many cases may be in the process of being re-traumatised. Their voice in these moments is just trying to be heard and we need to be listened to.

“There’s a lot of emphasis on the fact that patients need to be kind and considerate,

but when we have parents who are scared and traumatised, and really fearful of

what is wrong with their child, we need that to work the other way too.

“Parents shouldn’t be dismissed as they are so often, they just want to be listened to and feel like their child matters, not to feel inferior and like they don’t know what they’re

talking about. Invalidating someone can really impact a parent, so please just listen.

“While there are so many wonderful medical professionals who are compassionate and

very supportive, the experiences of so many parents, myself included, show us that

sadly, that isn’t always the case."