Pumped for Change

When Samantha Humphreys’ baby was born in a bundle of uncertainties, clarity was not delivered by doctors. Social media helped her discover her daughter’s diagnosis, master her feeding tube and, eventually, wean her off it. Now, Samantha is sharing her story – and helping tube-feeding families the world over.

Molly Humphreys had grown impatient with her feeding tube. Delays are part and parcel of her rare genetic condition – Cornelia de Lange syndrome – so she was late to walk, but skilled in the art of dashing about on her knees, all while dragging half her body weight around in the form of a feeding pump.

This toddler was no longer willing to sit still in her highchair for hours on end, waiting for her tummy to fill. She had places to be and things to do, so that pump was just going to have to come along for the ride.

“We had it tied to everything,” laughs Molly’s mum, Samantha. “She was in her walker with it. She even had it attached to her little trike. Molly was getting so frustrated with being plugged into the pump and that was our main reason for weaning her off her tube. It was holding her back.”

Molly is now five, leading a busy life of sandcastle building, strawberry picking and schoolwork. Physically and cognitively speaking, she’s keeping pace with her typically developing peers. Her main challenge, Samantha says, is anxiety.

“That stops Molly doing a lot of things. She’s selectively mute at school, so she hasn’t ever said one word in her two years there. She also won’t eat, drink or move around the classroom without help. She’s got these challenges, but she’s happy in herself.”

The Humphreys family – Molly, her parents, brother Logan, 10, seven-year-old sister Evie, and two pet axolotls – call the county of Suffolk, an hour northeast of London in the UK, home.

Molly’s older sister, Evie, is autistic, “so it’s almost like we’re on a different path,” says Samantha. “Our girls are different and that’s fine. We actually think that they’re way more interesting than other kids. They’ve got such personalities to them.”

Having spent her baby and toddlerhood with both a nasogastric (NG) and gastrostomy (G) tube, Molly has been feeding tube-free for over two years. But were it not for Molly’s own tenacity, her mother’s advocacy and a pandemic, this may not have been the case. During the UK’s Covid lockdowns, Molly transitioned from seven tube-feeds a day to only eating orally.

“I feel like if we hadn’t suggested doing this, no one else would have,’ says Samantha. “You’d think the NHS [National Health Service] would be like, ‘right, let’s see if this kid can come off this tube’. But they were quite happy for her to just keep being tube-fed. There was no support or weaning programs. Our dietitian didn’t have any weaning advice, she had to make it up on the spot.”

After slowly dropping her tube-feeds, by the time she was two-and-a-half, Molly’s paediatrician said that if she went three months without using her tube, she could go on the waiting list to have it removed.

“We got a call for the surgery just before Molly’s third birthday,” Samantha recalls. “She’s actually my best eater now and every time I see her eat, I’m still a little bit amazed. I never thought she was going to come off that tube.”

Back when she was pregnant with Molly, Samantha sailed through her 12 and 20-week ultrasounds. Then at 36 weeks, reduced foetal movements and a severe migraine saw Samantha admitted to hospital. “Because my mum had a history of preeclampsia, they wanted to check me over and do a scan of the baby,” she says. “That’s when they realised that Molly’s head was only measuring at 32 weeks and it all went into panic stations.”

At 37 weeks, Samantha was induced and Molly was born, healthy and crying. “But when I went to feed her, her jaw was locked shut,” says Samantha. “I breastfed my other two babies, so I knew what I was doing. It wasn’t like she had a bad latch, she just couldn’t open her mouth. I fed her drops of breastmilk and could barely even get a tiny syringe in there.”

Along with a severe tongue and lip tie, Molly had an undiagnosed submucous cleft palate. She also had terrible reflux, as her family would discover after Samantha and three-day-old Molly were sent home on a two-hourly feeding regimen. They returned to hospital a few months later when Molly developed bronchiolitis, RSV and then pneumonia.

“That was the first time she threw up brown stuff – the lining of her throat and stomach,” says Samantha. “Because she’d been in pain all those weeks with reflux, she just point blank refused to ever take a bottle again.”

At 12 weeks, Molly had an NG tube inserted and quickly developed a knack for pulling it out. She didn’t like face tape and would tug at it in the night, causing great anxiety for her mother. Often Molly would wake up with her face covered in tape – evidence of Samantha’s desperate attempts to keep her tube in place.

“That’s why we were begging to have the PEG [percutaneous endoscopic gastrostomy] operation, because I was like, I can’t live like this,’ Samantha recalls. ‘I’d go to change Evie’s nappy and turn around and Molly would be without her tube. In the week before her operation she had that tube out every single day and putting it back down again was horrible.”

Molly had an NG tube for nine months before a respiratory doctor wrote a letter recommending she have a G-tube. Meanwhile, she continued to struggle with reflux – but not your textbook kind.

“Part of Molly’s mystery is that she throws up this mucus stuff – it’s not pure reflux,” says Samantha. “You know kids’ toy slime? The texture is like that. No one could work out where it was coming from and from the minute she was born, she just threw that up. It got worse and worse until every time she had something go in her mouth, she’d bring it out.”

Samantha’s emetophobia – a fear of vomiting – certainly didn’t help. “I was a mess,” she says. “I did two rounds of CBT [cognitive behaviour therapy] to try and treat it. When I explained our situation to my therapist, he said, ‘oh, this is going to be hard. Normally what I’d say to people is, okay, you’re worried about vomit, but how often does vomit happen in a year for a child? But you’re having exposure therapy every single day’.”

Medication was the solution for Samantha, just as it was for her daughter. Soon after Molly turned one, while battling a bout of chest infections, a doctor put her on a long course of antibiotics.

“It was around Christmas time, so we let her have some Christmas dinner and she started having little nibbles of food and actually keeping it down,” says Samantha. “She wasn’t bringing up as much mucusy vomit. We told her respiratory team, they put her on an ongoing low dose of this antibiotic and things started to change.”

After three months on that antibiotic, the pandemic hit, lockdowns began and so too did Molly’s DIY tube-weaning regime.

“Lockdown was amazing for her, because she didn’t get ill,” says Samantha. “We were all just at home, in our garden, with far less social pressure. I didn’t have to worry about people staring at Molly or Evie so I was more relaxed and we had that time to not be so worried about the future. We were just living in the now.”

Month by month, as Molly dropped each of her seven daily tube-feeds, her taste buds explored food for the first time. Sharp flavours proved tricky – and taking her medicines by mouth was another challenge – but nowadays, she’s an expert at self-administering.

“I just put her medicine syringes in a little bowl for her and she gets a syringe, pops it in her mouth and then goes for the next one,” says Samantha. “Giving her back some control was really good for her.”

Once she was off her tube – and after 18 months of her antibiotic – Molly had another medication breakthrough. While attending a Cornelia de Lange syndrome conference, a doctor suggested she try a common asthma medicine, montelukast, that would get rid of her mucus issues for good. “So now there’s nothing stopping her with food!”

Samantha has since posted about this medicine on social media and, as a result, has heard from other families that have found it to be ‘life-changing’. She remains, as ever, a fierce advocate for the tube-feeding community.

“Molly wouldn’t be what she is today without that tube, it was a huge part of her journey,” she says. “Yes, it’s scary and it feels like a huge jump in the medical world because you’ve suddenly got a child with something in them that might be permanent. But it’s not something to be fearful of.

“Everyone always goes, ‘oh, I couldn’t do that’. But like any parent that’s never changed a nappy or done potty training, when the challenge comes to you, you do it. Tube-feeding isn’t scary, it’s just a process you’ve got to learn. It’s a good thing.”

While learning the process of Molly’s tube-feeding, Samantha and her husband, Martin, divided and conquered. Martin took care of then two-year-old Evie, while Samantha set up camp in Molly’s room. And this wasn’t the first time this couple had been hit with a hard knock. Just before Evie turned one, they suffered a traumatic miscarriage.

“After we lost our baby boy we had a really wobbly year and we had to do a lot of repairing on our relationship,” says Samantha. “Once we’d been through that, when we were then faced with Molly’s hospital admissions and being apart, it was kind of like, okay, we can do this, we’re a team. But it wasn’t easy. I can definitely see why people fall apart or lose themselves.”

Samantha says that in her experience of the NHS, very few professionals are trained to support parents with tube-feeding. “There was no dedicated team of tube-feeding doctors, just social media. I basically learned everything I needed to know from a Facebook group – from other parents – and that’s just how it is.”

Social media also played a major role in discovering Molly’s diagnosis. When Samantha came across the Facebook page of a mother whose son has Cornelia de Lange syndrome, she was astounded by the boy she saw.

“He walks exactly the same way that Molly walks, they have the same mannerisms, they even look similar – he could have passed for her cousin! And I just thought, oh my goodness, this is finally it.”

One of Molly’s doctors, however, brushed off the idea because Molly doesn’t have a unibrow – a typical feature of Cornelia de Lange syndrome. This doctor was only familiar with classical presentations of the condition, which include severe cognitive and physical delays.

“I said, ‘well, people with this syndrome are not all the same’,” Samantha recalls. “Molly’s doctor was wary of sourcing information from social media, but to satisfy my suspicions, they agreed to refer us to genetics.”

A few months later, there was no arguing with the results of Molly’s blood tests.

“That doctor didn’t look me in the face for so long,” laughs Samantha, who now shares generously about her family’s life on social media in the hope of helping others. “A diagnosis changed everything for us, so I’m quite passionate about this stuff.”

Having previously enjoyed working in property management, Samantha is happy to have a project outside of parenting – and her talent for photography comes in handy for creating content that keeps her growing following informed and inspired.

For other parents who want to be strong advocates for their children, she has this advice:

“Doctors can be quick to say that something isn’t going to work. So I always say to people, go in with what you would like to happen and if they say no, ask them, why not? Give me a reason why not. And if it’s still a no, say, can I trial it for a few months? If it doesn’t work by then or if it’s not shown improvement, fine. But we’ve tried it.

“I’m that person that doesn’t complain if I get a bad dinner at a restaurant, so I used to be really timid at medical appointments and be like, ‘oh, okay, never mind’. But now I’ve gained that voice. Even though it’s really uncomfortable, you have got to gain that voice.”