So what’s the big deal? Dangers of Informal Sharing Barbara Carr, MD, FAAP • Women have been sharing for centuries Medical Director Heart of America Mothers’ Milk Bank Medical Director Saint Luke’s Hospital of Kansas City NICU • What’s changed?

American Academy of Pediatrics • “Given the documented short- and long-term medical and neurodevelopmental advantages of , infant nutrition should be • Infection risks considered a public health issue and not only a • Medication risks lifestyle choice.” • does not condone informal milk sharing • Motivation concerns • in the NICU: “If mother’s own milk is unavailable despite significant lactation support, pasteurized donor milk should be used. Quality control of pasteurized donor milk is important and should be monitored.”

1 Food and Drug Intl Administration • Does not condone the practice of informal milk sharing • FDA recommends against feeding your baby acquired directly from • “When a mother contacts a Leader seeking donated individuals or through the Internet human milk, the Leader shall respond with information • When human milk is obtained directly from individuals or through the Internet, and support. This shall include information about induced the donor is unlikely to have been adequately screened for infectious disease or lactation and/or relactation. The Leader shall also suggest contamination risk. In addition, it is not likely that the human milk has been collected, processed, tested or stored in a way that reduces possible safety risks the mother dialogue with an appropriate, licensed health to the baby. care provider and contact a licensed human milk bank or • FDA recommends that if, after consultation with a healthcare provider, you other regulated and medically supervised human milk decide to feed a baby with human milk from a source other than the baby’s collection center in her country. The Leader shall inform mother, you should only use milk from a source that has screened its milk any mother interested in using donated human milk for donors and taken other precautions to ensure the safety of its milk. her baby, whether on an occasional or on a long term • There are human milk banks that take voluntary steps to screen milk donors, and safely collect, process, handle, test, and store the milk. In a few states, basis, of the documented benefits and risks connected there are required safety standards for such milk banks. FDA has not been with this form of infant feeding” involved in establishing these voluntary guidelines or state standards. www.fda.gov

Motivation Milk for Sale

• becoming more prominent • selling $1.50 to $2.50 per oz selling vs donating • • online forums exist to support buying/selling milk as well as referrals to milk banks.

2 • Own infant at risk? • adulterated milk? • honesty about medication or illicit drug use, infection risk factors?

Let’s not forget Uncle Legal implications Sam • Illegal in some states • Legal liability Women may be at risk for tax • may exist if adulterated milk is sold • evasion/fraud if they do not pay taxes • criminal liability may exist at state and on income received federal level if a mother has known communicable disease and sells her • This may ultimately be the area where milk the legal system becomes involved • Unlikely to act as a deterrent as hard to prove and usually milk is gone

3 For those that choose to donate and not sell For profit vs Non • legal implications with informal sharing? profit • Online forum vs Milk Bank

4 Safety concerns of posting online and delivering milk

• “within 2 days I had 10 men requesting milk” “one man said his wife had just Donated or sold other concerns exist • • died...but when I asked for proof he never called back” • pick up arrangements

5 tobacco

• 29% of the population smokes what may be in the • Nicotine has neuropsychological and behavioral effects milk that you hadn’t • present in breastmilk bargained for? • decreased growth • infantile colic • nicotine withdrawal • safety of nicotine gum not determined

marijuana alcohol

Animal studies suggest structural • appears quickly in fore and hind milk at changes in brain cells • levels >/= blood some evidence for DNA and RNA • developmental delay metabolism alteration • • care/storage of milk in question • how was milk cared for?

6 Medications and illicit drug use supplements

• PCP • cocaine may be acceptable for someone’s own heroin • • child but not for yours • amphetamine/methamphetamine • other

prescription Herbals medication

• mother’s milk tea • contains fenugreek • blood pressure meds • comfrey leaves • antidepressants • associated with venoocclusive • pain medications disease/hepatotoxicity

7 Infection risks cytomegalovirus

• HIV • Adults asymptomatic 90% of the time • Reactivation of latent virus can occur • Hepatitis B/C • Acquired disease in infants • Syphilis • pneumonia • HTLV • thrombocytopenia bacterial • • overwhelming infection • Other unknown? • greatest risk is for the preterm infant

HIV Hepatitis B • mother may be completely asymptomatic • incubation period may be as long as • Accounts for 40-45% of acute hepatitis 28months cases in the US (300,000 new cases per year) • can pass in breastmilk 1 million carriers • unlikely to become infected following • single breastmilk exposure • 1/3 are completely asymptomatic • antibodies also passed • incubation period is 2-4 months • maternal testing from perinatal period may be outdated

8 Hepatitis B Hepatitis B

• Highest risk of transmission is when • Anorexia, nausea, vomiting, weakness, mother has high titers of HBeAg abdominal pain, jaundice, wt loss • HBIG and Hep B vaccine are protective to • Chronic liver failure, cirrhosis, active mother’s own child if given day 1 hepatitis, hepatocellular carcinoma • Hep B vaccine-3 shot series over first • Infants frequently asymptomatic early 6mos of life on • Breastfeeding is not considered contraindicated for mother’s own child

Hepatitis C Syphilis

• Estimated 3 million infected in the US • Three stages: • Incubation period is 30-60days • Primary stage • 75% are asymptomatic • mother may be completely asymptomatic • chronic liver disease in 75-85% with occasional • incubation period is 10-90days fulminant liver failure • Secondary stage may not see for 10-20 years • • 4-10 weeks later; disseminated bloodstream infection • blood transmission-risk with cracked/bleeding • generalized rash-may be missed nipples • Tertiary Stage • infected infants may become viremic and progress to chronic hepatitis • CNS involvement

9 Human T cell Lymphotrophic Virus (HTLV)

• Currently not a major illness in the US • high rates in Japan • however is endemic in IV drug users and their sexual partners • Type 1 more worrisome than type II • mother may be completely asymptomatic-30% transmission rate • incubation period is decades • Adult leukemia, myelopathy or inflammatory disorder • HTLV-1–associated myelopathy/tropical spastic paraparesis (HAM/TSP) • Type II-chronic pneumonia, neurologic disorders, transmission rate through BF is unknown

Bacterial take home points contaminants in • women may be completely asymptomatic for extended time periods • Salmonellahuman mik and donating milk during this time • Listeria • E. coli prenatal screening may be outdated • • Campylobacter • women may not wish to share medical • Yersinia history, lifestyle or other risk factors • Tuberculosis with close friends/family • Staph aureus • Bacillus • yeast

10 Complications for the Staph aureus and infant Bacillus

• Gastrointestinal disease • Staph aureus N • produces a heat stable endotoxin • nausea • killed by pasteurization but the endotoxin remains intact • vomiting • Nausea, vomiting, diarrhea etc • Bacillus • diarrhea • produces endospores resistant to pasteurization • dehydration • associated with mastitis • spores release endotoxin upon germination resulting • hospitalization in nausea, vomiting, diarrhea etc

What about home How does HMBANA pasteurization/flash screen potential heating donors • may kill Group B strep, S aureus and E coli; • initial screen • others including bacillus may not be • extended screen affected • physician approval • still have heat stable endotoxin and • blood work spore risks

11 initial screen extended screen

• Reviews general health history • greater detail regarding medical history, • medication use pregnancy and health of the child • tobacco use • lifestyle issues • transfusion history • travel history • if they pass the initial screen the • medication history extended screen is sent out

physician/healthcare provider approval “so it’s all a question • Both mother and infant’s physician asked to recommend her as a suitable of relative risk” donor

12 Infection risks • 3.3% of donors test positive for HIV, how many of you would Syphilis, Hepatitis B or C, or HTLV • similar to blood/tissue banking statistics allow your child to receive a • disease rate 1.48% for blood/tissue blood transfusion on blood banking that had not been tested? • data not avail for HMBANA banks as follow up testing is done via primary physician • Bacterial risk is 1.6/1000

What’s the better answer?

13 What’s the better What’s the better answer? answer? • encourage and support breastfeeding as the healthiest choice public policies that promote and support educate about what “healthiest” really • • breastfeeding means increased support/development of milk do not condemn those who cannot or • • banks to increase a safer and more choose not to breastfeed affordable supply • encourage those who can share to donate

business case for breastfeeding

• www.womenshealth.gov • Packet of tools for human resource department, management, employees • discusses the benefits-health savings, employee loyalty/incr productivity

14 Thank you [email protected]

15