On the basis of our existing cleft team model for newborn referral and evaluation, we hypothesized that the rates of breastfeeding and/or providing expressed human milk were low compared with national averages. To study our theory, we elected to survey a cohort of mothers of infants with clefts to determine how many provided human milk and which factors were associated with their successes or failures with breastfeeding/milk expression. This was planned as a pilot project for baseline comparative data in advance of prospective outcomes studies of cleft team interventions designed to increase the rates of human milk provision to this vulnerable population. We anticipated this survey would demonstrate low numbers of cleft team mothers providing human milk to their infants. We were surprised to find that mother-reported rates of initiation mirrored national averages of all breastfeeding mothers (78.0% vs 79.2%, respectively). Rates of continuation, however, fell behind the national average of 49.4%, with only 32% of surveyed mothers providing human milk for 6 months. Cleft team mothers surpassed the regional averages for initiation rates of breastfeeding in our catchment area (69.9%-77.4%), but rates for continuation again fell below the 6-month regional averages.61 We recognize that many mothers stop breastfeeding early due to perceived challenges or disappointing results. Mothers officially reported “loss of milk supply” as the most common reason for stopping, but the many potential physiologic and psychosocial factors impacting a mother's milk supply make this a more complex issue.
This study shows that factors of gestational age, NICU stay, and even gender may potentially impact rates of human milk provision in the cleft population. Mothers of premature infants and/or those infants with altered health status are going to face more significant challenges to build and maintain an adequate milk supply. Research of mothers of infants with congenital heart defects shows institutional breastfeeding culture and provider experience can positively impact rates of initiation of human milk provision.59 Hospital nurses provide additional early support for these mothers, but after discharge, breastfeeding support should come from other sources including the cleft team and other ambulatory providers. If referral to the cleft team is made prior to hospital discharge, all efforts should be made to visit with the family to provide initial cleft care education including the use of human milk.
When consulting with a first-time mother, a single parent, a mother returning to work, or one placing a child in day care, healthcare providers should recognize the need for ongoing lactation support if the mother has initiated breastfeeding or expressed milk.58 First-time mothers had a high rate of initiation but a sharp drop-off in human milk provision over time. Helping a new mother learn appropriate ways to build her milk supply, identify supports, and manage stressors could improve overall duration rates by helping her through early breastfeeding difficulties. Single mothers had slightly lower initiation rates than average and an increased rate of cessation prior to 6 months. Time constraints are likely challenging for these mothers, and efforts to teach efficient breastfeeding and milk expression skills and encourage social supports may improve long-term human milk provision. Working mothers and those with children in day care also had lower rates of initiation of breastfeeding but slightly longer durations. These mothers are challenged with maintaining supply while separated from their infant during the day. Working mothers also describe many problems finding appropriate time and place to express milk while at work, the stress of which can further blunt a milk supply.7,15,48,52,53,55,62,63
One protective factor noted in this study was the positive impact of prenatal counseling. As has been shown by other investigators, mothers who received prenatal counseling for a cleft diagnosis in their unborn child appear to initiate breastfeeding at higher than average rates and continue providing human milk for longer periods of time.58,59,64,65 This was a very successful subset of breastfeeding mothers in the survey group. During a prenatal consult at our institution, mothers meet with a group of specialist providers from neonatology, plastic surgery, occupational therapy, lactation, genetics, and social work. The family is educated about the expected cleft diagnosis including potential feeding challenges and how to access feeding and lactation supports after delivery. Acquiring a breast pump is also recommended with a list of helpful resources. Preparing parents before delivery appears to translate to improved breastfeeding outcomes for these infants. Comparatively, mothers who knew about the cleft diagnosis but did not receive prenatal counseling had the worst breastfeeding outcomes in the survey group. These families may have relied on the Internet or other unreliable resources for prenatal information that discouraged breastfeeding these infants. Missing a prenatal counseling opportunity might also suggest family difficulties with accessing available resources, transportation, or medical compliance, which could ultimately impact several aspects of their infant's cleft care.
Effectively supporting cleft team mothers requires specific education for expression of milk with a pump when infants have CLP or CP. Typical breastfeeding education focuses on mothers feeding an infant directly at the breast, with limited teaching about milk expression. For exclusive milk expression to succeed, there is additional information to know for building and maintaining a supply and for safe storage and handling of the milk.13,15,72 In the limited studies on human milk expression, women report they practice milk expression for many reasons including storing milk for unexpected separations, relieving engorgement, maintaining supply, and for use after they return to work.7,13,55,73,74 For women who need to exclusively express their milk for their infant, many barriers have been described including establishing and maintaining adequate supply, increased time, and cost/access issues related to pump acquisition.1,12,13,56,62,75,76 The special challenges of exclusively expressing human milk often go unnoticed by friends, family, and healthcare providers. Many mothers report that traditional breastfeeding support groups react negatively to women who are primarily expressing milk, presuming it is for reasons of convenience rather than for clear health indications.75,76 These mothers deserve to feel supported and respected as much as possible for their efforts on behalf of their infants.12,13,66,75,76 Online support groups exist for mothers who express milk exclusively, but our mothers also need specialized lactation support that accounts for the dual challenges of exclusive milk expression and caring for an infant with cleft lip and palate.
Obtaining an appropriate breast pump through insurance used to be a challenge prior to passage of the Affordable Care Act (ACA). Many insurance policies did not cover the cost of lactation support or equipment related to breastfeeding, and families were not reimbursed for expenses incurred through pump rental or purchase. Research on programs that directly provided breast pumps to mothers prior to ACA showed dramatically improved rates of human milk provision for their infants.56,77,78 Although ACA legislation had already been passed at the time study was investigating, the requirement for breastfeeding provisions went into effect for new insurance policies on or after August 1, 2012, and were not required of preexisting policies.79 These coverage gaps may explain the variety of ways in which our mothers obtained and utilized their pumps. Nonetheless, the practice of borrowing/sharing single-use breast pumps is not advised or encouraged. We now encourage mothers to investigate their insurance plan's provisions for covering the cost of breast pump rental or purchase and for coverage of pre- and postnatal breastfeeding education by a lactation specialist or other trained provider.17,52,63,79,80 Since this time, we have empirically seen overall improvements in mothers' access to breastfeeding resources. Early studies have shown some improvements in duration of human milk provision but not in rates of initiation as a result of ACA implemenation.81
The primary limitation of this study is the potential for recall bias in the responding mothers. Because of our interest in understanding breastfeeding practices over the first year of life, all children were 1 to 2 years of age when their mothers were surveyed. This naturally creates a time delay that increases the potential for inaccurate reporting of data including the duration of breastfeeding, initial reasons for starting or stopping, or instances of encouragement or discouragement. The stress surrounding the birth of a child with a cleft, associated feeding issues, and 1 or more cleft-related surgical procedures in the first year of life might further contribute to poor recall of details related to this issue.
Other issues include the relatively small size of the survey group. We elected to study this particular group of children and their mothers because they were cared for prior to the institution of specific changes in our cleft team protocols for intake, education, and support. This group will serve as a baseline for comparison for any future research on the impact of breastfeeding interventions in our cleft lip and palate population. Our inability to contact 32 of our mothers reduced our total survey responses. Nonetheless, we successfully surveyed more than half of the potential mothers and the fairly consistent data we obtained suggest that the remaining mothers could reasonably be expected to represent a similar picture of our breastfeeding mothers' activities and experiences.
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