'I have a child with a rare genetic condition. I feel like I'm constantly judged.'

Morgan Dougall had only been a new mum for two weeks when she received an urgent phone call from the hospital about baby Nixon's screening test results.

"My husband Jimmy had just gone back to work, and I was at home alone with my baby when I got a call to say I needed to stop feeding him immediately and come straight to hospital," Morgan tells Leigh Campbell and Tegan Natoli on this week's episode of This Glorious Mess.

Listen to Morgan talk on This Glorious Mess talk about her son's rare genetic condition. Post continues below.

When they arrived at the neurology ward, she sat in a waiting room filled with a mix of kids with disabilities before meeting with a panel of five medical professionals to help explain Nixon's rare diagnosis.

"They told me he has a condition called Phenylketonuria, which is also known as PKU. It means that our son's body cannot break down an amino acid found in protein, because if he has too much of it, it will cause irreversible brain damage.

"Hearing this news, I was on autopilot. I was sort of nodding and smiling, but it was very overwhelming to take it all in."

According to Health Direct, PKU is a rare inherited genetic condition where your body cannot break down foods that contain protein. Babies diagnosed with PKU will develop normally in every way, as long as they keep to a strict, low-protein diet. 

Screening for PKU occurs for all babies born in Australia, with approximately 1 in 15,000 diagnosed with the rare condition.

The first thing Morgan was told to do was wean Nixon off breastfeeding to get him started on his special diet.

"It was incredibly tough because he was exclusively breastfed and then I had to suddenly completely stop breastfeeding and put him on to formula. 

"Once his levels had gone back down, I could reintroduce breastfeeding, but I had to use a stopwatch so I could put him on for a minute, and then had to take him off again.'

Nixon is now four-years-old and has a little brother Lincoln to keep him company. Morgan and her husband Jimmy still have to monitor exactly what Nixon eats at every meal. He has his blood tested once a week to make sure his levels are within the safe range.

"He is allowed to consume 11 grams of protein a day, so we have to weigh and measure everything he eats. At daycare, they'll send me a photo of his lunch box, which will then determine what he can have for afternoon tea, and then for dinner.

"It's a constant running equation in my mind, figuring out from one meal to the next what he can and can't eat and feeding a four-year-old is very difficult!" 

Nixon with baby brother Lincoln. Image: Supplied.

As Nixon gets older, Morgan says she's had to teach him he can't just eat what he wants.

"He is the most resilient little boy. We've just had to really drum into him what are his 'yes foods' and what are the 'no-no foods'. Anything he eats, he has to check with me beforehand.

"I am incredibly anxious about him starting school next year when we won't have eyes on him constantly, but I guess I am going to have to trust him. Already he'll go to a birthday party, he'll hit a pinata and then stand back and let everyone run to get the lollies because he knows he can't eat them."

Morgan says that if Nixon gets overly emotional or angry, she can tell that perhaps his levels are getting a bit out of range and she gives him some more formula. 

"We need to really be on top of Nixon's food intake and levels, which is the hardest part, and honestly, it's lucky that I have a decent brain between my ears because it's very hard to manage.

"One time Nixon had an ear infection, and I had a prescription to get him antibiotics. I had to go through four prescriptions before we settled on a medication because all kids' medicines have sweeteners and he can't have sweeteners either. If I wasn't that diligent and checking everything, it would have really affected him.

"When you're the mum, it all comes down to you, like no one else is checking these things as closely as I am."

Watch: Iconic denim outfits on Jeans for Genes Day. Post continues below. 

Morgan tells Leigh and Tegan that the PKU Facebook community has provided incredible support both online and in real life.

"Once a year there is a retreat so all the kids can get together and there's a chef that comes to cook their special food, which is amazing to connect and share.

"The Facebook group is an absolute lifeline. If it wasn't for the members of that group I would not have made it through the first year of Nixon's life because it was just so tough."

Morgan says that as PKU is such a rare condition, there are a lot of misconceptions and general misunderstandings about Nixon's life-threatening disorder.

"To look at him, you would never guess that there's any issue in the world and so people ask if he's vegan or he's got an allergy. I have to explain that no, it's a lot stricter than that. I carry scales in my handbag so that I can weigh food everywhere we go.

"I've been at a cafe and he'll say, 'Mum, can I have a bite of your toast?' and I say, 'No, you can't' and I get the evil eye from everyone else sitting there, thinking how rude I am because I won't share! But it's not about that. I have to be really strict because PKU is not like an allergy or anaphylaxis.

"We don't get an immediate response, instead the levels build up in the brain and then it's irreversible damage."

Managing PKU as a parent is incredibly challenging because as Morgan says, you simply can't relax or let your guard down even for a minute.

"It is very tough and relentless because we don't get a day off. We can't say, 'Let's just order a pizza tonight.' We have to always be prepared no matter what we're doing.

"There's no spontaneity, and it gets exhausting because of the constant checking of the labels, the questioning and having that trust in other people. I've got to rely on his daycare and know that I can trust that he's only eating what's in his lunch box and not sharing with his friends, and there's just constant anxiety."

Something else that many people don't consider is the financial cost of having to adhere to Nixon's incredibly strict diet.

"Much of the food that Nixon and the PKU community have to consume is through prescription or has to be ordered online.

"Consider your average pack of spaghetti, which we might pay $3 at Woolies for, is $15 for us. A pancake mix is $25! So, you know, when we've got a four-year-old who's being quite fussy and decides, he doesn't want pancakes this morning, we actually need to eat them because they were so very expensive!"

Morgan hopes to raise awareness of PKU this Jeans for Genes Day, so that parents and community members who do not have or care for someone with a genetic condition like Nixon, understand just what families like theirs go through.

"I would love to ask people to just make more generous assumptions of others. To have that understanding that if you see a parent out in public saying 'no' to their child, there might be more to it than simply being 'mean'.

"I want to raise awareness because every single child born in Australia is tested for PKU, but no one's ever heard of it. There needs to be more knowledge, education and compassion in the community."

Jeans for Genes Day is Friday, 4 August 2023. One in 20 kids face a birth defect or genetic disease, like cancer, cystic fibrosis, and life-threatening metabolic disorders. That's 12 kids born every minute worldwide. Wear your denim on Friday and help find treatments and cures by making a donation, buying gear or fundraising.

Feature Image: Supplied.