When Food Is A Problem

By: Kimberly Turner

We don’t take baby steps; we take nano steps,” says Dana Hening, whose son, Evan, had his first open-heart surgery when he was 19 days old and a heart transplant when he was six and a half months old.

“If I dwelled on the negative, I would be a very unhappy person,” she says. “But I have high expectations for Evan. He’s a great kid. His personality is stellar. He brings light when he walks in a room. Why would I stifle that? I want him to be happy, and he is. We just celebrate the little milestones as they come.”

Like many parents of babies born with CHDs, Henning’s journey to milestone celebrations was paved with obstacles — not only heart-related but also food- and nutrition-related. Babies with CHDs, especially those who require surgery or medical intervention, are much more likely than other kids to have feeding issues.

Like many parents of babies born with CHDs, Henning’s journey to milestone celebrations was paved with obstacles — not only heart-related but also food- and nutrition-related. Babies with CHDs, especially those who require surgery or medical intervention, are much more likely than other kids to have feeding issues.

Finding Acceptance

For his first 19 days of life, Evan was fed through total Parenteral Nutrition (TPN) – in other words, through an IV. After his transplant, doctors inserted a nasogastric (NG)
tube past his stomach and duodenum so they could feed him Similac Advance formula mixed with breastmilk. A few months later, Evan had surgery to insert a gastrostomy tube (G-tube) that allowed food to go directly into his stomach.

Attempts to feed him by mouth did not go well. “He was throwing up like 11 to 17 times a day,” says Henning. “We’re not talking about just spitting up once or twice. We’re talking extensive to the point that I was having to chart like a nurse, what medication I gave him, when I gave it to him, when he threw up, so I knew how long it had been since he had medication and whether I needed to re-dose or half- dose or whatever.”

Today, Evan experiments with food — putting it into his mouth, chewing it for the flavor — but still relies on the tube. And that is fine with Dana.

“A lot of parents I’ve talked to say, ‘I just really want to get off the tube.’ I’ll be honest with you, Evan’s feeding tube does not bother me in the slightest bit,” she says. “If he’s on it for the rest of his life, so be it. If you’d asked me, ‘Do you want him to be on a feeding tube for the rest of his life?’ I’d say
no. Did I think we’d be off it by now? Yeah, I did. But am I going to sit here and stress about the fact that he has a feeding tube? No. Another part of this is acceptance.”

A New Resource

Many moms have visions of peacefully breastfeeding their healthy newborn at home. Having these visions shattered and knowing that feeding your baby may be challenging adds stress, grief, anger and even guilt to the already terrifying CHD diagnosis. It is understandable, and these are valid feelings.

Dana Henning says acceptance is part of the journey when dealing with CHD-related feeding issues.

But whether your baby is receiving nutrients and calories via breastfeeding, bottle-feeding, TPN or tube, their survival and your love for them are the most important things you have as a family.

Because this scenario can be so difficult for families, Mended Little Hearts has created a new “Feeding Issues for Babies With CHD” guide.

“We’re seeing a lot of confusion around feeding,” says MLH Program Director Jodi Smith. “When we asked people about the things they wish the doctor had said or done when they heard their CHD diagnosis, I can’t tell you how many people said, ‘I really wish they had told us about feeding issues.’ We want people to know that they have choices and can ask questions and make decisions with their health care professionals about feeding their child.”

Smith recalls her own early experience with her son, who had surgery the day he was born: “When Joshua was born, I didn’t even think I had a choice [with feeding].
I was so busy keeping him alive. Survival was my No. 1 focus. He was on a TPN at first, and that scared me because I was like, ‘They’re not feeding him anything.’ I didn’t understand how that worked. No one who’s a parent knows what TPN means. It doesn’t even compute.” Later, he had an NG tube — an experience Smith calls “hugely stress producing.”

These personal experiences and feedback from MLH members and heart parents helped shape MLH’s new guide. The free resource provides 12 pages
of information and advice for parents — why babies with CHD are prone
to feeding issues, complications that affect feeding, types of food and feeding methods, tips for breastmilk production, questions to ask your doctor and more.

Cheerleader Mode

Carli Valentine knows how it feels to be confused about feeding. Her now-7-year- old son Finnegan was born with a vascular ring, meaning his aorta was wrapped around his trachea and esophagus. He vomited frequently as a newborn, but friends assured Valentine, a first-time mom, that it was normal. Eventually, the projectile vomiting increased to the point that his mother knew something was wrong. Finnegan had heart surgery at 18 months.

After his surgery, the doctor told Valentine that it could take years for
her son to eat normally. “And that was kind of it,” she says. “We were left to fend for ourselves. It was really stressful because after so long not eating solids, you have to basically re-teach a kid how to eat. Simple things get developmentally missed. They need to practice chewing. They need to gain muscle and learn not to be scared and fearful of food. Because feeling like you’re choking makes it very scary to eat.”

Today, Finnegan still has swallowing and eating issues, but has made a great deal of progress. The family turned to feeding and speech therapists — they have seen at least six, and Valentine stresses that if you strike out with one therapist, “the key is not to give up. Keep trying.” But they also put in the work at home.

“Be encouraging, even if the child doesn’t want to eat the food,” she says. “Have them play with it and get used to it and feel it. The one thing that really helped my son with some of the fear of eating was cooking with us. That made him more excited to try new foods and eat. And it was like, ‘Just taste it. If you don’t want it, you can spit it out. If it’s too hard, you can spit it out. That’s OK. You’re just getting used to it.’ Really be a cheerleader for your kids to help make eating more fun and less scary.”

The family tried putting a variety of foods on a plate and letting Finnegan choose what he’d like to eat. They were often amazed at what he was willing to try. When they are old enough, Valentine advises parents to let kids play an active role in choices.

When her son told her that he was terrified of chicken nuggets, she wondered why. An allergy test later revealed he was allergic to chicken. “It’s so important to trust your child’s judgment and instincts,” she says. “Because there were so many times when he knew what was right for his body. It’s important not to push them so hard because I think, deep down, they really do know what they’re comfortable with and what they can and can’t eat and what’s going to make them unsafe.”

Connecting With Your Tribe

Coping with a CHD diagnosis and feeding issues can leave new parents feeling isolated and confused. That’s why managing your own stress and connect- ing with other heart families is vital.

“Reach out to somebody that you can actually relate to or that can relate to your situation,” says Henning. “That’s key for anything you go through, whether it’s heart stuff, feeding stuff or whatever. Because it’s hard to know what to do.”

Henning met other heart moms through MLH of Dallas when Evan was in the hospital there. “That was our saving grace,” she says. “It’s so nice to see other heart moms with other kids, to talk to people who have been there and hear some of the struggles they’ve had. You feel like you’re finally finding your tribe because nobody else in my family has a kid who needed a heart transplant or a kid with a heart problem that we know of, so my friends and family were no help. That was really difficult.”

Get help where you can. Facebook groups can be incredibly helpful, as are social workers at hospitals who can point you toward much-needed resources. MLH’s guide to feeding issues is available now for every heart parent. (Visit the Resources section of the Mended Little Hearts website to get a free online version.)

Most importantly, Henning says to remember that “Each kid is going to move at their own pace. Don’t be afraid. If you’re progressing then all of a sudden, they regress, that’s normal too. Parents need to know that. Sometimes you take five steps forward. Sometimes, you take three steps back. When that happens, you can regroup, and move forward again.