Breastfeeding the HLHS Baby - the Practitioner Perspective
Nutrition Series
By: Michelle Steltzer, CPNP-AC, Cardiovascular Program Nurse Practitioner
On Monday, one our Sisters by Heart moms, Amy, shared the parent perspective on the question of whether it’s possible to breastfeed an HLHS baby. Today, we are fortunate enough to have two seasoned practitioners from Boston Children’s Hospital provide their perspective on breastfeeding an HLHS baby!
Michelle Steltzer, CPNP-AC
Cardiovascular Program Nurse Practitioner
Michelle is currently working on publishing a case study on a breastfeeding HLHSer who transitioned to fully breastfeeding during the interstage period with excellent growth.
It is an honor to share my perspective with Sisters by Heart and I truly appreciate all the work that you do each day to reach out, connect, and support families with HLHS. As mentioned, the congenital heart disease population is near and dear to my heart having worked many years as a bedside nurse in the ICU and in 1999 as a cardiology nurse practitioner in the ICU/ward at Children's Hospital of Wisconsin/Medical College of Wisconsin (1993-2007). I transitioned to a cardiovascular surgery nurse practitioner on the ward at Boston Children’s Hospital 5 years ago. Through the years, I have written a lot about nutrition, spoken at national and local conferences, and gained much experiential practical knowledge at the bedside with amazing insight provided by great patients and families like you folks struggling with feeding, growth, and nutrition. I am happy to share my perspective with you and trust you find it useful.
On a daily basis, I am inspired by the dedication and passion of so many families that ensure the benefits of breast milk are available for their infant via breast feeding, expressed breast milk by bottle, and/ or other tube feedings. As a mother of two children that breastfed both infants until going back to work, it is no simple request for any parent. Breastfeeding is a lot of hard work and requires much dedication and support by the entire family to ensure success. Currently, as Amy mentioned, I am working on writing up a case study that will give a detailed description of one mom’s successful transition to breastfeeding during the interstage period. To give you perspective, I walked to the patient’s bedside following morning rounds report by my NP colleagues after not seeing this particular infant since the initial newborn surgical hospital stay. Upon seeing the infant, I promptly walked out of the room thinking to myself, “This patient cannot possibly be the patient advertised during sign out by my peers that recently had a Glenn surgery. I must be in the wrong patient room.” Needless to say, I was completely wrong in my presumption and will share more details in a journal publication in the future about this practice changing experience.
One key to success, particularly in the CHD population, is reaching out and truly engaging all members involved in your infant’s care team that is rallying for successful growth and nutrition. This includes: first and foremost the family, pediatrician, referring and primary cardiologist, hospital teams (prenatally, postnatally in CICU, floor wards, and follow-up clinic visits), early intervention, speech/feeding therapy, and cardiac developmental centers available at your institution/region. These team players (from nursing, lactation, nutrition, MD, therapists, etc) along with family dedication are essential to ongoing success with breastfeeding for this high risk and fragile population - particularly during the interstage period. This period is often described as a very isolating experience for the family, particularly for a dedicated breastfeeding mother. Thoughtful discussions with mothers and families throughout all care opportunities with health care providers are critical to ensure the best outcome for the infant and family.
As Amy mentioned, breastfeeding and oral feeding in general is a lot of work and a "stress test,” particularly for infants with HLHS. Realizing this at baseline is important because there can be additional complicating morbidity factors that may impact the stress of feeding. Some of these concerns are: poor ventricular function, valve regurgitation, breathing fast due to too much blood flow or other respiratory concerns, vocal cord injury, oral aversion, reflux, other non-cardiac anomalies, and other morbidity factors that may contribute to an infant's failure to thrive and grow. Having said that, these factors should not limit the decision to utilize breast milk and all its beneficial immune properties.
Discussions with health care providers about breastfeeding and utilizing your precious breast milk is essential. It is also important to note, that there are some special cases such as chylous effusion (milky appearing fluid accumulating or draining around the lungs), milk protein allergy, or guiac positive (bloody) stools that may require alternative supports for nutrition. In these instances, a conversation about alternative options and adjustment in the breast milk diet may need to occur in the short term period.
Practical 5 Pearls of Wisdom to Share with Moms Interested in Breastfeeding
1. Discuss prenatally and postnatally your thoughts on breastfeeding. On a daily basis bring up your desire to encourage breastfeeding and connect with all your lactation resources early.
2. Keep your breast milk supply up drinking proper fluids and frequent pumping at least every 3 hours. If concerned, please reach out to your lactation consultant early. This way you will have plenty of that nutrient rich milk with all its beneficial immune properties when your baby is ready. *Please see below our lactation consultant expert from Boston Children’s Hospital, Karen Sussman-Karten’s input for other pearls of wisdom on breast milk supply and “lactoengineering.”
3. Practice patience and persistence. Never miss an opportunity to practice. Try to breastfeed or even just work on non-nutritive suck if your team agrees during the inpatient stay (preoperatively if possible) and outpatient. In some cases, you may need to be persistent in your requests to try breastfeeding, but don't be shy in speaking up for your baby. Once your child is on bolus feedings, there are at least 8 feeds at least in a day and thus 8 times to practice daily with the health care team and ultimately the primary feeders of the infant after discharge.
4. Advocate and utilize the resources available to you in the home surveillance monitoring program (saturations, heart rate, daily weights, and logging the number, volume, and length of feeds-particularly if breastfeeding).
It continues to be an issue among some institutions that insurances will not cover scales. Advocate early with your primary team, ask for scales that weigh to at least 10grams (there are many on the market), and if possible consider scales that weigh to <10 grams.
Communicate honestly with your providers about how the breastfeeding and growth is progressing. It is important to share with your providers if you are noticing fatigue, sweating or diaphoresis during feedings because these may be a sign that your baby is working too hard to feed to adequately grow and thrive.
Avoid feeding (by bottle or breast) longer than 20-30 minutes to minimize losing more calories during the feeding process than actually gaining. There are some weeks where you may need to add more bottle feeds due to your family circumstances or or infant’s illness. Make sure to pay particularly close attention to your baby’s progress with your home scale. These periods may warrant more detailed intake and should not be thought of as a failure to breastfeed successfully.
Remember the nature of shunt dependent blood flow in HLHS heightens your infant’s vulnerability during the interstage period, and this is the primary reason why home surveillance monitoring was introduced over a decade ago. In some cases, your infant may require to be seen by your local providers (cardiology or pediatrician) or visit the emergency room for reassessment of plan of care. Some instances may require readmission for closer monitoring of feeding and cardiovascular status. This is by no means a failure on your part, but the “nature of the disease process of HLHS.”
5. Be practical with your expectations. Don't expect your baby to fully breastfeed by the time of first discharge following stage 1 palliation (whether it is Norwood with BT shunt, Sano with right ventricular to pulmonary artery homograft, or Hybrid). Lastly, please remember that you are not alone, take care of yourself, and never give up!
Karen Sussman-Karten, RN, IBCLC
Karen is a Lactation Consultant in the Lactation Support Program at Boston Children’s Hospital and is currently the Board Chair of the Mother’s Milk Bank of New England.
Amy and Michelle have shared so much valuable wisdom about breastfeeding and providing breastmilk for CHD babies. I have been a lactation consultant at Boston Children’s Hospital since 2006 and I have a few more thoughts for you.
Having adequate milk production is the foundation for success. Without it your options are limited. Since your baby will probably not be able to breastfeed in the first few days, expressing milk is essential to establish milk production. It’s important to start as soon after delivery as possible. Pumping frequently, every 2-4 hours is recommended. You may be able to collect more milk with manual expression in those early days. “Hands on pumping,” massaging and compressing while using a breast pump, can also result in collecting more milk.
Think of your early breastfeeding attempts as practice sessions. Don’t expect your baby to drink large volumes at the breast initially. Try not to get discouraged; practicing will lead to improvement over time and the skin to skin contact can help with milk production and breastfeeding.
Once your baby seems to be drinking at the breast, doing a pre and post feed weight to measure intake can be helpful, particularly in the hospital when you have access to use a very accurate scale for pre and post weights. As mentioned by Amy, our parent expert, most baby scales intended for daily weight checks are not sensitive enough to weigh less than 10 grams. Of course purchasing an accurate scale can be costly. You may want to consider renting one like the Medela baby weigh scale for home based on your infant’s progression with breastfeeding. It’s very important to keep your baby in the same clothing and diaper for the pre and post weight. Changing the diaper or weighing your baby naked will not give accurate results.
“Lactoengineering” refers to ways of altering the breast milk or breastfeeding to meet your CHD baby’s specific needs. Since getting the most calories is a major concern, there are some techniques you can use to increase caloric intake. The caloric content of your breast milk can be tested using a creamatocrit machine or milk analyzer. Some hospitals have this equipment. The assumption is that breast milk has 20 calories per ounce but when tested it is often higher. This becomes important if your infant’s EBM is being fortified above 20 calories per ounce, potentially up to 26 or 28 or more calories per ounce. Some infants do not tolerate the additives for a higher calorie diet so it can be very helpful to know the general caloric density of your breast milk as a baseline. Sometimes the additives can be reduced or eliminated depending on the results. Beware, the fat content of your milk varies throughout the day so testing once is like a snapshot of the calories per ounce.
Another interesting phenomenon is that the fat content of your milk increases toward the end of a nursing or pumping session. If you make more milk than your baby drinks, you can use more of the fat rich “hindmilk” to increase the calories. You can pump for the first 3 minutes and freeze that “foremilk” for later use. Then either nurse your baby or pump the remainder of the “hindmilk” and use only that.
If your baby has a chylous effusion, they cannot tolerate the fat portion (long chain fatty acids) in breast milk. It is possible to separate the fat from your milk and use the “skimmed” breastmilk. This can be done with a centrifuge machine or with other methods of allowing the milk to separate and removing the cream layer. This “skimmed” breast milk will need to have other oils and nutrients added to make up for the calories lost by removing the cream. This allows your baby to continue receiving your milk rather than a special formula while they have a chylous effusion.
Thank you so much, Michelle and Karen for your helpful insights into breastfeeding a child with a complex congenital heart defect like HLHS!
Stay tuned for next week’s post in our nutrition series, “The Cardiac Newborn!”