Fed is Best - Feeding a CDH Baby

A common question most parents have is, “Will I be able to breastfeed my CDH baby?” or even “Will my baby ever eat by mouth?” Though the answer will be a little more complicated than what you probably wish, and no two CDH journeys are the same, there is hope. Most children born with CDH are eating by mouth successfully! As my son’s CDH surgeon always reminded us, “CDH is a marathon, not a sprint.” It takes time to reach the finish line, but you will get there with the right mindset and medical staff.

Why do some CDH babies/kids need G-Tubes?

Well, a lot of CDH babies suffer from reflux, and severe cases end up being on a ventilator or CPAP for longer than we’d like. They don’t get to practice eating early on and often develop oral aversions from having had tubes in their mouth. They also have to learn to suck and swallow while simultaneously breathing, which isn’t easy given their tiny CDH lungs. So, without diving too deep into the medical reasons, the eating process can be a little more challenging and often the longest process of their ICU journey (though there are exceptions).

Will my CDH baby ever learn to eat by mouth?

Don’t let this worry you. Many go on to breastfeed or bottle-feed like champs and get on the fast track out of the ICU! However, should your baby need a G-tube, you will still be able to pump for them if that’s your wish. Typically a G-Tube is only a temporary tool to keep them well-nourished as they learn to eat by mouth.

Here is a little bit about my feeding story with my son in hopes of giving you some encouragement. When my son was born, I had every intention of breastfeeding him as soon as they would allow me to. Though he did latch for a little bit, he really struggled to suck enough to get milk and take a full feed. I kept pumping and bottle feeding him until one day, he decided to stop bottle feeding! Thank goodness for the G-tube and thank goodness for all the stored breast milk I accumulated from pumping. That breast milk would feed my son for a year after my milk had dried up, and my body stopped responding to the pump. Though wonderful for him, that breast milk would also one day need fortification (formula) because he would need more calories to maintain an adequate weight. Though not part of my original birth plan, that formula helped my son get strong and that G-Tube, oh that glorious G-Tube, would get us through his first stomach bug and many, many moments when he wanted nothing to do with eating by mouth.

I was sure my son would graduate high school with that G-Tube, but much to my surprise, he was weaned around his first birthday, and we had it removed two months later. I’ll admit, sometimes, on the days when he’s being a picky toddler, I wish I could pop that G-tube back in! Slowly but surely, solid food became his best friend, and my son was eating like a full-grown teenage boy. He would surprise even his feeding therapist with the amount of food he would eat! It just took time, therapy, and patience to get to this point.

If I can give you any advice, keep an open mind and remember that it’s okay if your CDH journey doesn’t go 100% according to plan. If a G-tube is needed, view it as a valuable resource and know that it helps your baby meet with success. Also, never stop advocating for your CDH baby. Ask medical professionals and lactation consultants any questions you may have along the way. 

If the hospital where your baby is born offers any feeding therapy or help, accept it. Even if your Tiny Hero does go home 100% dependent on a G-tube, learn from the hospital staff so you can apply their methods at home. If you’re scared of a G-tube, have the nurses and doctors train you until it is less intimidating. Once you are home, reach out to feeding therapists and get your baby feeding therapy. This is so beneficial, as the therapist will be able to teach you methods that you can use to get your child over their oral aversions and fear of eating.

If your baby can’t safely breastfeed or bottle-feed, don’t give up trying. If you have found Tiny Hero, find their support group on Facebook. Join it and learn from parents who have walked the same path as you. Ask questions, ask for advice, and find the methods that work for your baby. Then, return the favor and help those walking the path after you. 

Whatever you do, never give up hope or lose sight of the blessing that is ahead. The goal is to bring your CDH baby home and healthy, no matter how their nutritional needs are met. If you’ve been a parent for even a split second, Mom and Dad know the “fed is best campaign.” While this isn’t exactly that, I hope you’re reassured that no matter how your child ends up eating, they will be nurtured and loved and growing. After all, that is our goal: a healthy, happy, growing baby with CDH.

Thanks to Ally Sanchez for contributing to Fed is Best - Feeding a Baby with CDH

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