Breastfeeding the HLHS Baby - the Parent Perspective
Nutrition Series
By: Amy Bennet, Parent
March is Nutrition month! In honor of Nutrition month, we’ve created a special blog series on nutrition. We’re kicking off the month with a post on breastfeeding, written by one of our own Sisters by Heart moms, Amy, mom to Bodie. We will follow it with a series on nutrition issues faced by our HLHSers, all provided by Emily LaRose, Dietitian at Children’s Hospital of Los Angeles. Without further adieu, Happy Nutrition Month – and happy breastfeeding!
“Will I be able to breastfeed my baby?” This question gets asked SO often, and the answer is not terribly straightforward. I wanted to take a few moments to answer this question from the perspective of a mom who’s been there and wondered the exact same thing.
I should mention that I’m a huge fan of breastfeeding. I breastfed my heart-healthy (now 5-year old) daughter until she self-weaned right around her 2nd birthday. So, breastfeeding is important to me. It was something I desperately wanted to do with my HLHSer, but, for a myriad of reasons, was unable to. I ultimately pumped for him for 10 months and had enough breast milk to last him until 15 months of age. For most HLHSers, breastfeeding, at least exclusively, simply isn’t feasible. There are a lot of factors working against breastfeeding our special kiddos. The rare mom who is able to exclusively breastfeed is a bit like an exotic animal observed in the wild, while the rest of us stare and whisper in awe. BUT it is possible for some mothers, and partially breastfeeding is possible for many more. If breastfeeding is important to you, by all means, try to make it work! Here are some things to keep in mind:
Monitoring
Many hospitals follow an interstage monitoring program, which requires parents to track specific data points (i.e. oxygen saturations, heart rate, weight, intake). Thus far, monitoring programs are reducing interstage mortality. Feedings are tracked closely interstage, since even slowing down slightly during feeds raises a red flag for practitioners. The ability to monitor the exact amount of “ins” for your baby is crucial – an easy task when armed with a bottle, but obviously more difficult with breastfeeding. For this reason, some hospitals discourage breastfeeding. Some doctors are uncomfortable with how difficult it is to measure feeds done via breastfeeding. But it’s not impossible! You can overcome this obstacle if your insurance approves a scale, by purchasing a baby scale, or renting one yourself weighing your baby before and after each feed to calculate the exact amount of breast milk taken. It’s more challenging, but definitely not impossible. There are some scales that weigh to smaller increments, but are also much more costly. Finding one that weighs to 10 grams is often reasonable enough for most families to track the daily weights.
Weight gain and cardiac function
This is probably the biggest obstacle to exclusively breastfeeding an HLHS baby. One of your primary goals interstage is to grow your HLHSer big enough to be ready for his or her second stage surgery, either the Glenn or the Hemi-Fontan. Many interstage HLHSers struggle with growth because their hearts are working so hard. It’s very common for interstage babies to receive supplemented formula or breast milk for higher caloric concentration. In my case, I pumped, and my son was not able to gain weight on the calories in my breast milk alone, so my pumped milk was fortified with a high calorie formula. If your baby cannot gain weight on the calories in breast milk alone and fortification is necessary, exclusive breastfeeding simply may not be a possibility, at least until after the second stage surgery when growth is typically less of an issue. But, that doesn’t mean you can’t breastfeed at all. I do know a number of HLHS mothers who’ve breastfed a few times a day and fed with fortified formula for the remainder of their feeds. If this is the only thing stopping you, definitely check with your cardiologist to see whether this might be a possibility.
Related to weight gain, it takes a lot of work to eat, whether by breast or bottle. For some babies, particularly those whose cardiac function is depressed, it can be really hard to gain enough weight on oral feeding, even if it’s supplemented, because their hearts are simply working too hard. For these babies, tube feeds are necessary to allow the baby to grow without having to work for it. But again, that doesn’t mean you can’t pump breast milk and tube feed your baby, so that they can still get the immune boosting benefits of breast milk.
Swallowing
Another thing that can sometimes play a major role in whether or not you’ll be able to feed is whether your baby has any swallowing issues. In my son’s case, his left vocal cord was paralyzed during his Norwood (not an uncommon complication following open heart surgery where work is done on the aorta, as the nerve controlling the vocal cords run alongside the aorta – due to the extensive amount of aortic reconstruction during the Norwood, this complication is seen). Vocal cords are what protect the baby’s airway. For a baby with vocal cord paresis, the paralyzed vocal cord lacks the ability to adequately protect the airway and, depending on the severity of the paralysis, oral feeds may need to be thickened using a thickening agent or avoided altogether. In either case, although breastfeeding is not safe for the baby until either the affected cord heals or the remaining cord compensates, you can still pump breast milk and feed it to your baby via bottle or feeding tube.
Feeding Difficulties
Many of our HLHSers have difficulties with feeding in general. Often, these difficulties come in the form of oral aversions, or difficulty coordinating sucking, swallowing and breathing simultaneously. There are many factors that can cause this. For babies at institutions that do not allow oral feeds prior to the Norwood, sometimes, by the time the baby has had surgery, been extubated and finally given a chance to take a bottle or breastfeed, the newborn’s sucking reflex is gone and they quite literally do not know what to do with a bottle or breast. Or they can suck, but can’t quite coordinate their swallowing and breathing effectively. For others, particularly those on the ventilator for prolonged periods of time, they may associate things being in their mouth with discomfort and pain, and oral feeds are quite challenging. In both of these cases, breastfeeding is unlikely; however, there are a few things you can do to try to work through this and enable your baby to take a bottle of pumped breast milk.
In Sisters by Heart care packages, we include newborn pacifiers, and encourage parents to use them with their newborn prior to surgery and until the baby is permitted to attempt oral feeds. While it will not guarantee a baby will retain that sucking reflex, it can help keep the baby in touch with that sucking reflex. You can also ask your medical team to intubate through the nose, rather than the mouth, so that the baby can take a pacifier even while intubated. (Some, but not all, institutions can comply with the request, depending on your child’s situation.) And, definitely, seek out occupational therapy, lactation specialists and feeding therapist as soon as possible at your surgical center because they are often very practical at providing a lot of strategies to encourage oral feeding and breastfeeding.
As you can see, the question of whether or not you’ll be able to breastfeed your HLHSer, or any complex CHDer for that matter, can be a loaded one, dependent on a lot of factors. Yes, the odds are stacked against you being able to exclusively breastfeed, but that doesn’t mean it can’t happen; many mothers are able to pump and alternate breastfeeds with bottle feeds. If this is something that’s important to you, then push for it. Let your medical team know upfront that you intend to breastfeed (I told my entire medical team while I was still pregnant, in fact!).
And if breastfeeding simply isn’t an option for any of the reasons mentioned above, pumping is almost always an option – so, to those of you moms who fall into this category, I say pump, pump and pump away!!! The benefits of breast milk are huge, regardless of the source: breast, bottle or feeding tube. It’s not easy to pump exclusively, but take it from someone who’s been there, in your shoes – it is absolutely worth it! Do what you can to keep your supply up and pump as long as you can – whether it’s 1 day, 1 week or 1 year, your CHDer will receive benefits!
Many hospitals have resources dedicated to lactation support for cardiac patients, so make sure to ask! For instance, Children’s Hospital of Philadelphia provides a lot of great information on breastfeeding a cardiac patient here!
Another hospital currently focusing on lactation support for cardiac patients is Boston Children’s Hospital. Stay tuned for Thursday’s post, where two practitioners from BCH share their input on this important topic!
Thank you, Amy, for sharing your insights with us!