Breastfeeding your CDH Baby
Upon diagnosis, one of the first things mothers often ask is, “Will I be able to breastfeed?” This is such a tricky question to answer because there are so many factors to consider; however, it is important to know that just because your baby has CDH, it doesn’t automatically mean that nursing will not be an option. While it may not always be the case, many CDH babies can and do learn to nurse with great success! If it is something you would like to pursue with your baby, we have some advice to help give you and your baby the best chance possible.
Pumping: A successful breastfeeding journey starts with the willingness to pump on day one. Newborns eat 8-10 times a day, so you must pump that many times as well. By creating a solid routine and pumping every 3-4 hours around the clock, your body will be ready when they are. When pumping, it’s ideal to aim for 1-4 ounces on each side. To do this, consider pumping both sides simultaneously - this will speed up the pumping process and will help stimulate a better letdown. Many women also find using a pumping bra to be really helpful. It will simplify the process and keep your hands free to do other things. The important thing to remember is that while you wait for your baby to be ready to nurse, you will want to treat the pump as if it is a newborn, which means not skipping pumping sessions, even overnight, for a while. Also, be sure to drink a lot of water and drinks with electrolytes to stay extra hydrated. If you notice that your supply is getting low, you can add foods such as oatmeal or lactation cookies to your diet to help it improve. Many women also find that it helps milk production to pump near their baby or while looking at pictures of them. It also helps to make sure you have a high-quality pump. Most hospitals will provide a hospital-grade pump while you are with your baby, but for nights and times when you aren’t at the hospital, be sure to find a great pump. Spectra and Madela are two top brand choices. Finally, as you pump, keep track of how long it takes to pump and your average output. This will allow the team to assess how much milk your baby is receiving during feeds. Some important things to remember are that even if your baby only ever consumes your milk through a bottle or a G-tube, you are still successfully breastfeeding your baby. Also, if you have trouble producing enough milk or simply decide that pumping isn’t right for you, that is okay too! Ultimately fed is best, and as long as your baby is getting the nutrients they need, that’s all that matters!
Diet: Babies with CDH often have very sensitive tummies. Because you will be building a stockpile of milk for future use, it will be impossible to know what food you ate in each bag of milk or adjust your diet as your baby seems affected by something you’ve eaten. It is for this reason that being proactive during the pumping process will help. By cutting out or limiting any foods that may cause gas or reflux, you are increasing the likelihood that your milk will be well tolerated when they are ready for it. These items include things such as spicy foods, broccoli, onion, beans, cabbage, peppermint, tomato, too much coffee, and excessive amounts of citrus. Many people also like to eliminate or reduce dairy from their diet as well.
Skin to Skin: As soon as you are allowed to hold your baby, start doing skin to skin. This will help develop your bond and let your baby start seeing you as their source of comfort and security.
Introducing Breastfeeding: Each hospital will introduce breastfeeding in its own way. Talk to the doctors and nurses ahead of time to get a feel for the process and let them know that it is something you would like to pursue. Depending on the hospital's feelings towards breastfeeding medically complex babies, you may need to advocate for yourself and work with them to create a plan that works for everyone. This may include 2-3 days of exclusive breastfeeding, with you available to provide all feeds while holding off on introducing bottle feeds. Doing this can help eliminate the chance of your baby developing a preference for the bottle before ever solidly attempting to nurse. When you first begin nursing, many hospitals will suggest you practice nursing immediately after pumping to not overwhelm or scare your baby with too much milk right away. It will also allow them to receive the fattier hind milk vs. the foremilk, which can cause gas and discomfort. Often if you do this for a few days, then half full for a few days, until they reach full volume feeds. Discussing the plan for how nursing will be introduced will help everyone be on the same page.
Lactation Consultant: Even if you have nursed in the past, take advantage of the lactation consultants that are available in the hospital. Ask for her to be there during your first attempt or two. She will help you find a good technique and learn how to navigate nursing when your baby is hooked to a lot of leads.
Physical Therapist: Having the hospital's PT come by and help with your baby's body position, specifically their tailbone alignment, may help as well! Sometimes simply aligning the back better or adjusting a hold can make the process go more smoothly!
Build in Breaks: Sometimes Tiny Heroes will often appear to be lazy eaters. They may fall asleep nursing or seem uninterested. Eating takes a lot of work, and they have to learn to coordinate their suck and swallow while also learning to breathe and exercise their little lungs. Be patient and allow for breathing breaks. It is realistic to plan for a feeding to take 30-45 minutes. You can pace out the feed and continue alternating between the breast and breaks based on your baby’s needs. When ready to continue the feed, you can massage their feet or rub their head to help keep them engaged. You can also massage your breast to help the milk flow more easily and take some of the workload away from them. Keeping a journal, or using a breastfeeding app, while you nurse is very helpful. This will help gauge the volume intake of feeds and keep track of how long they nurse and on which side(s). If your baby nurses for 5 minutes or less, they may decide a bottle is needed or to supplement with fortified breast milk (adding formula to the milk to increase the caloric intake). However, if they have nursed for 15+ minutes, they will likely consider it a full feed!
Tongue Ties: Many babies with CDH are born with tongue and/or lip ties. If your Tiny Hero is having trouble with their latch, have the lactation consultant evaluate their mouth for ties. If ties are present, you can ask for them to be released. This can greatly improve the chances of nursing success!
Pacifiers: Typically mother’s like to hold off introducing pacifiers because they can cause nipple confusion; however, with a CDH baby, who hasn’t ever had anything good in their mouth (only ventilators and tubes), they can sometimes help develop the sucking motion. They can also help with oral aversions by teaching your baby that having something in their mouth is soothing. If the team is on board, pacifiers can be given while on the ventilator by cutting the side to fit around the ventilator. Another thing you can do while your baby is on the ventilator is colostrum care. This involves using a cotton swab to gently swab your baby’s gums, lips, and inside their mouth with colostrum. This will not only provide a positive oral experience but also help ward off infections and begin preparing their body to digest breast milk later.
Nipple Shields: A good latch will eliminate excess air from being swallowed, leading to tummy upset and spitting up calories. If your baby won’t latch or your lactation notices the latch is an issue, you can ask about using a shield. This often helps the baby get a deeper latch and find success. It can be weaned out once they start figuring it out. It is important to note that shields can sometimes impact supply, so if you opt to use one, make sure to continue pumping and monitoring output.
Pumping: If your baby takes to breastfeeding, be sure to continue pumping after they nurse to maintain supply. Often babies with CDH will not take a full feed, so you want to ensure your body doesn’t lessen the supply to meet the lower demand of your baby.
Play with Positions: There are numerous ways to hold your baby and also a variety of pillows and options for support. Play around with different holds and pillow supports until you find the one your baby prefers. Some holds that work well with leads include: football hold, using a boppy or support pillow for side feeds, and, if possible, laying down on your side with your baby fully supported.
On demand or a schedule: You will want to work with your baby’s nurses and the lactation consultant to develop a schedule that is right for your baby. Some families will stick to an every 2-4 hour schedule like clockwork (which is easier when in the hospital), while others may opt to do an on-demand style feeding routine (which may allow a few extra calories to be snuck in). Figure out what works best for your baby and stay consistent to the plan, being available at the hospital for each feed.
Nissen/G-Tube: Despite all of our best efforts to eliminate gassy and reflux-causing foods, some babies with CDH will still have severe reflux due to their unique anatomy. Continuously spitting up after feeds can cause issues with weight gain and silent aspiration, which can be very scary. In these cases, it will usually be recommended to proceed with a Nissen fundoplication and G-tube (directly into the stomach) or NG tube (a tube that goes through the nose into the stomach). Even if your baby needs these surgeries, you can continue to work on nursing while using the tube to feed as well. With the tube, you can supplement calories lost or even provide additional calories with fortified breast milk (breast milk with formula to increase caloric intake). We have several great G-tube resources you can check out to help with this process as well.
At Home: Once you go home, even if nursing has not clicked and they are largely bottle or G-tube fed, you can likely continue to work with your baby and practice nursing if you desire. Chiropractors can be really beneficial because they can work with the soft palate of their mouth and release any muscle tightness or torticollis. It can also help with reflux and GI issues. Hiring a high-quality lactation consultant can also really help you navigate the transition home.
Plan B: Feeding can be one of the most frustrating and emotional aspects of the CDH journey. Remember to take deep breaths and stay calm as you and your baby practice nursing. Keep the room peaceful and surround yourself with supportive people, but most importantly, remember that you are doing an amazing job! Also, remember to be flexible and that at the end of the day, all that matters is that your baby is growing. Breast, bottle, and feeding tubes are all wonderful options, and they all allow your baby to continue to receive your breastmilk. If your baby struggles with nursing, it will be okay. They can still have all the benefits of breastmilk, and your bond will be stronger than ever because of all you’ve been through together! Stay patient and consistent! You’ve got this!
Click here to view some of our favorite breastfeeding products!