Podcaster, author and parent of two tube-fed children, Jillian Arnold, on feeding related PTSD, getting comfy with comparison and charting your own course.

People don’t talk about the post-traumatic stress (PTSD) that comes from caring for a kid who can’t keep their food down. But Jillian Arnold does – and she’s sharing truths like this with a growing community of fellow medical parents through her podcast, Confessions of a Rare Disease Mama.

Ohio-based Jillian and her husband, Donald, are parents to Roman (6) and Stella (5), who both have an ultra-rare, life-limiting condition called ASMD (acid sphingomyelinase deficiency, or Niemann Pick Disease Type A/B). This condition has no known cure and, in more profound cases – like that of Roman and Stella – causes a rapid neurodegeneration, much like childhood dementia.

Since their kids came along, Jillian and Donald have fought to access experimental treatments and are raising funds toward research around their condition. Alongside her podcast, Jillian has also authored and published a children’s book, Soaring Together, which tells the story of Roman and Stella, two butterfly siblings whose parents support them to explore the world.

In this chat, Jillian is candid on the challenges and joys that come with raising rare children. She also shares how tube-feeding helps her kids thrive and why diet has played a part in keeping them happy, healthy – and exceeding all expectations.

It’s such a treat to speak with you, Jillian. How are the kids?

I don't want to jinx anything – but they’re doing well. Kids with their condition don’t typically live past age three and we have worked really, really hard to get them on a couple of experimental treatments. I think that, combined with getting them the best possible nutrition we can, has really done amazing things for them. Which is evident, now, because my son is six and my daughter is five. They’re trailblazing a new trajectory for their condition, which is so incredible to see and makes me so proud to be their mama.

When did you realise you wouldn’t be travelling a typical path, feeding-wise, with your kids?

One of the first symptoms we noticed was that my son’s liver and spleen were very enlarged. That was putting a lot of pressure on his belly, so one of our big issues when he was little – and why he wasn’t on the growth curve for a long time – was because he was constantly vomiting.

We felt like we were feeding him around the clock just to get like the bare minimum of nutrients. I mean, I have PTSD just thinking of us writing a food record. Like, ‘at 2am he had 1ml of food’. We found one of those sheets the other day and I showed it to my husband and we both were like, oh, God.

That was really, really hard because I felt like we couldn’t go anywhere. Our kids weren’t getting the experiences that typical kids get because we were constantly feeding Roman, and he was constantly throwing up and we felt like we couldn’t leave the house.

Once we got his feeding tube and got him started on an enzyme replacement therapy, it was definitely a game changer. Both of our kids’ livers and spleens are a normal size now. They’re able to hold a normal amount of volume in their bellies. We definitely had some rough times but I feel like we’re through the worst part.

How old was Roman when he first got his feeding tube – and how did you feel about it then?

He was one when he got it and it was definitely something we went back and forth about. Roman started with an NG [nasogastric tube]. That lasted for about a month, at which point we were like, take it out, give us the G-tube, we hate this thing!

There’s something defeating about coming to terms with the fact that your child needs a feeding tube and there are certain things that you grieve. Like, we’re going to miss out on this “normal” feeding experience. And what does this mean for our life?

There was also so much unknown with the feeding tube – and this was only a year into his diagnosis. The medical parenting realm was a whole new world for us. Now we’re changing G-tubes and doing all the things like it’s nothing. But at first, it was very scary.

Back then, Roman just kept falling off the growth curve. He wasn’t gaining weight and I felt like there were so many aspects of his condition – both of my kids’ condition – that I had absolutely no control over. So I thought, if getting a feeding tube means I can control just one aspect of their health – and know that I’m giving them proper nutrition and hydration – let’s do it.

Plus, we were utterly exhausted. I don’t think people talk about how mentally and emotionally draining it is feeding your child all day long. It takes a toll on you.

Once Roman got his feeding tube, how did you land on the right nutrition for him?

I did a lot of research and was hearing from a lot of other parents about how a real-food blended diet was so beneficial for their kids and it really helped with their vomiting and reflux. So I knew, when Roman was around 18 months old, that I wanted to transition to a real-food blended diet. But I got some pushback from the nutritionist at the hospital.

I remember me and my husband expressing how we wanted to try real food, blended formulas and the dietitian was like, “oh no, you don’t want that. That’s just real food blended up.” And we were like, huh? Me and my husband both looked at each other like, what? I’m so lost right now. That seems like the best possible food to be giving our kid.

There’s been a little bit of a shift in the hospital and medical settings since then, because I think more physicians are realising that there really is something to this and there is a great benefit to these kids.

We got Roman started on Real Food Blends. And while Stella ate by mouth a little longer than he did and didn’t have the vomiting issues, by the time she turned two, she’d started falling off the growth curve. We knew that her liver and spleen were also putting pressure on her stomach and once we started seeing her arms and legs getting skinnier, we knew it was time for her to get a G-tube.

I don't want to say it easier, because there’s still a lot of feelings that come along with it. But we saw what a positive impact it had on Roman and we couldn’t wait to get that for Stella as well.

Nowadays, what does eating look like for both of your kids?

Our kids used Real Food Blends for a couple years when they first got their tubes and then, due to insurance issues, we had to transition to Compleat Pediatric Organic Blend. These blends are vegan – and I think this has really had a positive impact on their health, too.

With their condition, their body has a harder time breaking down a certain type of fat. So in my mind, it made sense to try out a vegan diet. I was pitching it to our doctors because I always like to run everything past them. And you know how doctors get all doctor-y? They were like, “there’s no data that shows this would be beneficial”. And I was like, I don’t care. I think we’re going to try it.

So they’re currently having their Compleat blends and we like to add in some natural anti-inflammatories, like olive oil, turmeric. We’ll also add some other goodies, like bananas and spinach, as well as a protein almond milk.

What do Roman and Stella’s tube-fed meals look like, day-to-day?

They currently are getting bolus fed, so we syringe feed them three times a day. That was a huge thing for us – when we transitioned off of the feeding pump. I felt like that was another massive win, because we had one less piece of equipment to lug around. And they’re on the pump overnight for additional water, just so we can keep up on their hydration – because they’re getting big!

I would love to get to the point, someday, where we are home blending all of their food. But right now I have to prioritise, what is the most important thing? Because our time is so limited. Everything seems so overwhelming to me and I’m so thankful that there are real food-blended formulas out there that we can use. Hopefully, when things calm down a bit – even if it’s just one meal a day – I would love to do home blends.

I’m not very handy in the kitchen but Donald loves being in there, so he mixes up their feed in the morning for the day and puts it in the squeezy bottles that we use. We always joke that, if we ever have a third child, we’re going to be like first-time parents trying to feed this kid. I have two nieces and one of them is the same age as Stella, and when she was learning to eat, I was like, is that okay? She’s putting a whole noodle in her mouth - are you sure she’s not going to aspirate?!

On that point, how have you felt about watching your kids grow up alongside typically-feeding loved ones?

There are times when it’s hard with my niece, because me and my sister were pregnant with our girls at the same time. It’s hard not to compare – especially early on, watching my daughter regress and lose skills was just devastating. I was watching my niece continue to reach milestones that I knew my daughter was never going to hit. So that in itself was pretty soul crushing.

The same goes with food. Even now when we go out to eat, there will be times when our nieces are eating ice cream and I feel like our kids are just kind of sitting there. It does bring up some emotions, for sure, but I think that the difference now is that I have learned how to rein them in better.

Being this far into it now, I’ve come to realise that those feelings will never go away. That’s something I'll have to deal with for the remainder of my life – and that’s normal. It’s okay to feel those weird grief feelings and comparison feelings that are kind of yucky. But you don’t want to sit and dwell in them.

So now I’ll recognise it, I’ll feel it and go, yeah, that kind of sucks. That’s sad that I’m not going to get that experience with my children. But it is what it is. And you know what? I’m thankful for their feeding tubes. And also, am I just projecting my wants? Yes, I’m missing out on that experience of watching my daughter eat an ice cream cone. But does she really care?

We still give her a little taste of ice cream here and there and that’s something that warms my mama heart, but at the same time, I don’t know if she really even likes it. So I think that’s something to keep in mind, too. My kids really don’t know any different. They have had their feeding tubes for so long and this is just how they live. And it’s not any worse or any better. It’s just different.

Love that perspective. Do you have any other advice, especially for families who are new to the experience of tube-feeding?

When we were brand new to it, we were pretty overwhelmed. Changing a G-tube at home was a little terrifying – I made my husband do it the first three times. But I promise, to anyone out there who’s new to this and is feeling like they're in over their head or thinking, ‘am I making the right decision for my child?’ At the end of the day, you know your child best. It is a big decision but I promise you're making the right one and things will get easier.

Another thing we worried about was, how is this going to work when we leave the house with all the equipment? But you'll get your groove. You’ll make it out of the house and it will become your new normal.

Confession Time