Dear Editor,
It was of great interest and pleasure to read the recent editorial, "Donor Human Milk Is Not the Solution." I concur with many opinions articulated in the editorial; however, resulting from my personal experience as a parent of a neonatal intensive care unit (NICU) infant, I wish to provide additional insight.
I agree with the antenatal education proposed by the author. I went into premature labor at 26 weeks' gestation. I was hospitalized and medicated to delay labor for 4 days before giving birth. I recall a great deal of time in hospital waiting before labor reestablished-time (in comparison with postdelivery events) that was relatively calm and optimistic, which could have been used to prepare me to express. As this was not the case, I presumed I would not be able to breastfeed as the infant would be intubated, incubated, and too small to feed at the breast. I did not know that expressing was an option.
I concur there is a need to provide expression assistance until mothers can do so independently. Despite not being told antenatally that I could express my milk for our premature infant, I was happy-although somewhat surprised-that within 2 hours of giving birth, and during the following 12 hours, I was shown by 2 midwives how to express colostrum by hand using sterile syringes. Being shown by midwives how to express was extremely valuable and the main reason I started, and persevered, with expressing. After being discharged from the care of the midwifery team, and while still expressing colostrum, a neonatal nurse showed me how to use a breast pump. It was a demoralizing experience as no milk was expressed using the pump. Regardless of being shown how to use the breast pump once, I still needed support, guidance, and reassurance with using it, which I did not get from NICU staff. Initially, I was not confident to express by the incubator and did not want to ask if a neonatal nurse could leave our son's incubator so they could show me how to express. To me, their role was to care for our son and not to show me something I should be able to do as a mother. Therefore, I believe that support from a dedicated expressing support person would be invaluable.
I share the author's opinion that mothers should have access to hospital-grade breast pumps; however, appropriate equipment is required to ensure equipment is sterilized. While in the NICU, I was urged to express at least 8 times a day and at least once in the night to maintain a milk supply. Mothers were able to express beside the incubator or in a dedicated expressing room where breast pumps and cold-water sterilizing units for each mother were stored. Healthcare assistants were responsible for cleaning the area and refreshing the sterilizing units. I was also able to rent a hospital-grade breast pump from the NICU to express at night when away from the NICU; however, the NICU did not provide a cold-water sterilizing unit or the sterilizing solution required. I recall how challenging it was to obtain these essential items as a shocked, scared, and sleep-deprived first-time parent to an extremely premature infant in the NICU, with the added complexity of navigating pandemic lockdown restrictions. Access to a breast pump is almost pointless if you are unable to sterilize pumping equipment.
Although the editorial did not refer to it, it is my strong opinion that the importance of hygiene when expressing human milk needs to be better communicated to NICU parents. Unlike feeding at the breast, parents have the additional hygienic burden of cleaning and sterilizing the pump and feeding vessels, as well as ensuring safe storage and transportation of expressed human milk. Given my background in food safety, I asked many questions regarding infection control when expressing. My supposed "paranoia about germs," seemed to annoy some members of the NICU team, whereas others were empathetic and reassured me that I was doing the right thing. When asked, the recommended hygiene practices included using the cold-water sterilizing unit, date-labeling and refrigerating human milk immediately after expressing, and transporting human milk to the NICU in a cool bag. All information was verbal; no written information was provided to me to refer back to when needed. I knew hygiene was essential to prevent my expressed milk being a potential source of infection; however, discussion always focused upon the frequency of expressing and quantity expressed.
During our 32 days in the NICU, I saw several practices that made me question other mothers' hygiene perceptions and practices when expressing. For example, one mother would remove the flanges, valves, connectors, and milk bottles from the cold-water sterilizing unit and rinse all component parts in tap water before putting together and attaching to the pump to express milk. Another mother would use the disposable paper towels from the hand washing sink to dry the bottles and equipment after removing from the sterilizing solution before using. I saw sterilized component parts dropped and used without further sterilizing, and sterilized equipment handled with unwashed hands. I believe that any communication or educational efforts to support mothers to express must inform and enable parents to implement appropriate hygiene practices to help safeguard vulnerable infants.
Furthermore, I believe women should be supported when they must stop expressing. Unfortunately, my expressing and breastfeeding journey came to an end when our son died after 32 days of life. We left without our infant, but with medication prescribed to suppress lactation. I did not want to take the medication, as expressing was the only thing I'd ever done as a mother, and I wanted to stop gradually, on my own terms; however, there was no support or information given on how to safely stop expressing, which resulted in mastitis. Similarly, no options were presented if I wanted to donate my milk. Advice and information need to be appropriate to the wants and needs of the mother.
Although my response is not based on clinical experience, it is because of my experience as a NICU parent. In summary, I believe that:
* Information detailing the importance of, and how to, express mother's own milk needs to take a multiresource approach, to ensure the information not only is suitable for different learning preferences (eg, in multiple formats-written, verbal, visual) but also demonstrated. This needs to be on multiple occasions by the multidisciplinary team to increase credibility and to allow sufficient opportunities for questioning, support, and reassurance.
* Emphasis should be placed on the critical importance of ensuring the hygiene of equipment used to express human milk. Such information should be delivered to both parents, as non-birth parents may play an essential role in supporting milk expression, by cleaning the pump, sterilizing equipment, or labeling, storing, and transporting expressed human milk.
* Mothers should be able to not only access hospital-grade pumps to use both in the NICU and at home but also have access to essential sterilizing equipment/solution.
* There is a need to understand the impact of lactation suppression upon the grieving process and ensure bereaved mothers are supported in safe lactation suppression.
I will always be thankful for the care and support we received as a NICU family. I hope my response to the editorial will be insightful to those who support the parents of infants receiving care in the NICU.
-Ellen W. Evans, PhD
Food Safety Research Fellow
ZERO2FIVE Food Industry Centre
Cardiff Metropolitan University
Cardiff, United Kingdom