Letters

Dear ENN,

If there is one thing that we have learnt from the current Ebola virus disease (EVD) outbreak it is that regardless of infection status, Ebola comes bringing bad times for mothers and infants. More than a year into the EVD emergency that has affected mainly Guinea, Liberia and Sierra Leone, I thought it would be of interest to review some of the experiences and issues related to work within Ebola Treatment Centres (ETCs) and the impact of the disease at a wider community level.

Since the beginning of the crisis, many colleagues in the nutrition sector have tried to answer difficult questions on en-net:¹Is the virus transmitted via breastmilk? When it became apparent that it was, the next question was for how long was the virus transmittable after recovery? Evidence was continuously being generated and shared in a context that was changing continually itself. Recommendations were often obsolete shortly after becoming official guidelines. In November 2014, the National Viral Haemorrhagic Fever (VHF) pocket guidelines, developed by WHO, took on the recommendations from the Infant Feeding and Ebola Interim Gui­dance produced by several expert agencies²a month earlier, recommending the continuation of breastfeeding when both mother and infant were confirmed EVD cases. Breastfeeding “outweighs any possible benefits of replacement feeding. It is therefore recommended the infant remains with the mother and is breastfed…”

However, some non-governmental organisations (NGOs) argued that these recommendations were wrong and that the repeat re-infection risk was too high. These organisations ensured that in their clinics, all neonates born to Ebola positive mothers, or mothers and infants that tested positive at the centre, were separated. In these cases, all the infants were given breast milk substitutes (BMS). Recent email exchanges highlighted that reports UNICEF received have indicated that in a couple of instances, infants and children who were not separated from their mothers had worse outcomes. This has not been demonstrated to date with sufficient evidence. If a mother has EBV and the neonate also tests positive, the fear amongst field workers is that breastfeeding (which would likely result in cross-infection) will have a high probability of aggravating the infant’s condition, further compounding the problem. If this is the case, then discontinuation of breastfeeding in maternal/infant positive cases may be a sensible approach, despite the outcome being ultimately the same; the death of the neonate.

It has been several months since the pocket guidelines were issued in November 2014. With the epidemic slowing but still dangerous, an updated version of these guidelines will be published shortly. It is likely to finally include the recommendation to avoid all breastfeeding from the onset of symptoms and to use artificial feeding. They will also note that a specific period for the virus to disappear from breastmilk or semen cannot be calculated safely, as demonstrated with the last case in Liberia that was sexually transmitted six months after the infection source has survived Ebola. The only way to be sure of the safety window is to periodically test survivors, although this will probably exacerbate the climate of fear and stigmatisation in affected communities.

Few cases of 2 and 3 year old children surviving have been recorded, and there have been no cases of survival of infants under 6 months (I consulted with GOAL, MSF Spain, IMC, and Save the Children in Sierra Leone who drew upon their regional experiences in their feedback; I thank for the time and information shared). Therefore it is currently impossible to obtain any significant baseline data.

The psychological implications of separating mother and baby have been discussed, as have the challenges of negotiating with mothers who refused to allow their baby go to another ward and preferred to stay with them. A partial spontaneous solution has been to engage survivors to care for these infants with minimal Personal Protective Equipment (PPE), as they were local, eager and could not be infected with Ebola again. These survivors have been a great asset for the care of infants and children in the ETC, and many decided to stay or returned to help after finding reintegration in their own communities a challenge due to stigma. These dilemmas ultimately fall within a child protection discourse and have been tackled differently depending on the area. Engaging survivors in childcare can help the mother to feel more confident – her infant is being fed and cared for by a woman from her community who can go back and forth in the ward so the mother can see her infant; whether mothers in this situation hold and are concerned regarding misbeliefs and taboos regarding survivors, as witnessed in the general community, is unknown. Further support approaches must be developed and shared. We are facing moral/ethical issues every bit as important as medical ones and there are no easy answers just hard questions.

The efficacy of alternative infant feeding methods³ in relation to risk of mother/baby contamination has been discussed endlessly by nutrition partners, with the realisation that there is no safe option for both health workers in the ETC and the patients. Feeding utensils and human contact both carry high risks of contamination. GOAL opted for a syringe with a feeding tube attached to it as the first choice, considering this to be the safest way of feeding an infant in these circumstances.

Risks and impact at household and community level are also considerable and perhaps not given the attention they deserve. Returning survivors can infect those in their households and communities and the fear of this is long-lasting. Ebola has impacted the way people relate to each other and in turn, behave. Its wider impact on breastfeeding practices will be felt long after the outbreak is over, in part due to the rapidly changing advice that was disseminated among the population and also the misinformation and taboos that surround such an aggressive disease, which have had a negative impact across the entire population so that EBF rates have declined.

As one expert shared on en-net;⁴ Current understanding is that the virus can be transmitted by breastfeeding, and in the case of confirmed maternal infection, breastfeeding is contraindicated (PAHO, WHO). However, this does not capture the whole problem. Many infections present the same way and there will be lots of suspected cases that turn out to be something else. There is a fear that anxious mothers with these early symptoms will stop breastfeeding and not restart when they are confirmed Ebola negative, "in case" it turns out to be Ebola”. Also, pregnancy seems to have an impact on the way the disease presents itself, with confusing symptoms or none at all. An asymptomatic mother would die after delivering a healthy baby that tests negative but dies of the infection a few days later (or even weeks - one infant born in an MSF centre, whose mother passed away, survived the infection for 19 days). There is still much that we do not know about Ebola and the transmission reservoir for this virus.

Whilst waiting for a vaccine to use at scale, we must acknowledge there is an urgent need for research to answer key questions more than one year into the biggest haemorrhagic fever outbreak in history:

• How long do survivors take to become free of any trace of the virus? How different is it for the various body fluids (sperm, milk, blood…. etc.)?
• How long after interrupting breastfeeding is it recommended to wait before resuming? Is the safest recommendation to terminate breastfeeding permanently?
• Is there an impact on subsequent pregnancies for survivors? When will it be safe to become pregnant again?
• Does separating the mother and infant when they are both infected make any difference in survival outcomes?
• Does the cross contamination risk outweigh deprivation from maternal immunisation?
• What support can be provided to a mother who refuses to be separated from her baby in an ETC? How can separation be made more bearable for both of them?
• Does the use of infant formula have any impact (positive or negative) on the chances of survival of infants infected with EVD? How does this compare with breastfeeding?
• How different will breastfeeding practices in the general population be after the outbreak compared to the pre-outbreak baseline?
• In those with altered breastfeeding practices, what kind of behaviour change approach will be necessary to help the communities, and especially pregnant and breastfeeding women, to overcome the fear and taboos that have arisen from this outbreak and how this fear was managed at the time?

I also have to ask myself and colleagues the most ethically challenging question of all; how important is it to dedicate funding to infected subjects that have no chances of survival? Would it be a better use of resources to focus on providing assets and psychosocial support to the survivors and the rest of the uninfected community who have had to bear increasing poverty as a result of the outbreak?

This is surely a key question and one that merits consideration. A significant criticism of the Ebola response has been that it largely ignored the health and other needs of the remainder of the population. This lack of support contributed to intra-community tension and conflicts and exacerbated stigma for survivors. The effects of the quarantine are expected to create a harsher than usual hunger gap for those communities that missed the cultivation window, whilst the subsequent rise in market prices of these foods will in turn affect the wider population of the affected countries.

Yours sincerely,

Óscar Serrano Oria

Roving Nutrition Advisor

GOAL Ireland

¹http://www.en-net.org/question/1445.aspx

²Guidance produced through informal consultation involving UNICEF technical advisors at HQ, regional & country levels; WHO Infant and Young Child Feeding and Ebola specialists; CDC Atlanta; Ministry of Health and Social Welfare Liberia; in-country staff working as part of the Ebola response; en-net technical forum respondents and the ENN.

³ Bottle feeding, finger feeding, glove feeding, syringe feeding, etc

⁴http://www.en-net.org/question/1445.aspx