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ILCA Conference 2019

Write up of the 2019 International Lactation Consultants

Conference by ALCI President Sue Jameson.

 

Attending ILCA 2019 was the usual mix of the very familiar and the very new, both in terms of content, and of attendees.  As a Partner Organisation our role  is to promote our country and it’s activities whenever we get the opportunity. It is also to encourage membership of ILCA to our members. Ger Cahill ( who is currently an ILCA Board Member) and I did this with gusto!  Socialising with many friends old and now – making new contacts with women from Aruba – a tiny island community in the Caribbean.

 

While ILCA has great aspirations to be a fully internationally representative organisation, the flavour is distinctly American. Conferences are by and large held in America, there is little in the way of translated materials and English is the conference language. The theme this year was ‘Engage’ and it was the aspiration of the conference planners to fulfill these objectives:

 

  • Apply skill development and global networking among lactation specialists in an inclusive environment
  • Recommend research related to human lactation and encourage its integration in clinical practice
  • Integrate greater development of cultural humility among lactation specialists
  • Use ethical, evidence-based practice that protects the well-being of breastfeeding/chestfeeding/lactating families in diverse contexts
  • Practice breastfeeding/chestfeeding as the biological norm for feeding and nurturing infants and young children
  • Provide equitable access to lactation, skilled lactation care, and the IBCLC® profession
  • Provide support of families’ informed decisions regarding lactation
  • Outline lactation-supportive practices in health care, social service, and community settings

 

The now familiar acknowledgement of the ancestral lands of the native peoples of  the area started us on our way for the four days and the Cherokee welcome was given by Mechell in her peoples’ language.

 

Our first event was the Partners’ lunch.  This was a great way for all the organisations to meet and greet, welcome the newcomers and hear what is happening across the globe.  Each table has a rep from the ILCA Board who could help to introduce members and give us all an opportunity to share. This was very successful and Mudiwah Kadeshe, the current president went out of her way to make us all feel welcome and included.

 

The first thing that strikes you is the scale of everything.  We were in a hotel with 47 floors, fully air conditioned throughout to such a degree that it was chilly at times!  Looking up from the atrium floor was a dizzying sight.  Looking down from the 47th floor was mesmerising as people scurried around like ants far below. To give a sense of scale, there were three other huge functions happening at the same time as ILCA and we never saw many of them except for the Philippino Nurses Organisation who were delighted to speak with us. An Indian wedding in the level below us went on for 24 hrs.

 

I was sharing with Daiva Snuikaite my colleague from Lithuania who was representing The European Lactation Consultants Association, ELACTA. Each partner organisation was allocated a table to represent their country.  Sadly, only ourselves, Lithuania, Australia, Mexico and Peru, had anything other than a few flyers placed on their table. We shared space with the group representing women in the Military which gave lots of opportunity to chat about the unique challenges facing them as parents.

 

 

 

 

So to the conference itself.  The range and quality of speakers on the issue of diversity and equity was impressive. There are a couple of Plenary Sessions each day where all the attendees come together to hear a presentation.  At the other sessions there are many concurrent topics on offer and it is often difficult to choose where to go.  I was lucky enough to be able to volunteer as a welcome and introduction person for three of these presentations. Two were very well known to us here at home, Cathy Watson Genna and Liz Brooks.  The other session I chose to introduce was Jan Tedder, BSN, IBCLC; and Elsa Quintana, BA, BCJ, IBCLC, RLC, CLE talking about one of my favourite topics – infant development and promotion of parenting skills.

 

The day starts early with the first sessions kicking off at 8.30am. There are regular breaks where attendees are encouraged to visit the trade stands. These ranged from the sublime to the ridiculous.

 

Another strange offering was a device like a plastic tube to place under the breast to give the correct angle to the nipple – why on earth???  There was every variety of pump and gadget imaginable plus all sorts of add ons to regular pumps.  Milk storage devices, timers, and of course education opportunities – GOLD, iLactation, Sage publications, LER online, health- elearning, Bartlett & Jones to name but a few. Worth having repeated visits to the trade stands as they all had delicious choccies and other goodies to be sampled while chatting to the stall holders.

 

So let’s look at some of the sessions.  The theme for the conference was ‘Engage’ so the focus was on engaging with communities and ethnic groups who traditionally may not have had access to the skilled timely help that breastfeeding so often requires.

 

The main Plenary speakers covered the issues of  racism and exclusion,  supporting breastfeeding parents in times of crisis, diversity and legal matters pertaining to custody and care.

 

Achieving Health Equity in Breastfeeding: Naming and Addressing Racism and Other Systems of Structured Inequity  was presented by Dr Camara Jones MD, MPH, PhD . Dr Jones

 

Motivations for Entering the Lactation Profession: Perspectives from People of Color (Ifeyinwa Asiodu). As a researcher, registered nurse, and lactation consultant, her research is focused on the intersection of race, systemic and structural barriers, life course perspective, and increasing access to human milk and breastfeeding support.

 

What is the Role for IBCLCs in Emergencies? (Aunchalee Palmquist, Lourdes Santaballa)

Aunchalee Palmquist is an Assistant Professor at the University of North Carolina. She is a medical anthropologist and International Board Certified Lactation Consultant.

Dr. Palmquist’s interdisciplinary work bridges critical biocultural anthropology and global public health. She conducts community-based participatory research and uses both ethnographic methods and mixed-methods approaches. Her work is informed by human rights frameworks and a reproductive justice lens.

Dr. Palmquist is the lead Lactation and Infant Feeding in Emergencies (L.I.F.E.) Initiative and the Humanitarian Maternal and Child Health Program. She serves on the WHO/UNICEF Global Breastfeeding Collective, the Emergency Nutrition Network IFE Core Group, the CORE group Humanitarian-Development Task Force, and the United States Breastfeeding Committee. Dr. Palmquist has previously served as an International Lactation Consultants Association liaison to the United Nations.

Lourdes Santaballa is a community activist and organizer, with a background in domestic violence, affordable housing, and economic equity advocacy. A La Leche League leader from 2009-2017 and IBCLC since 2011, she was the founder of the lactation program at sePARE, providing coordinated services to low income families, leading it to receive the ILCA Care Award and received the Wilson-Clay Hoover Award for Research. Lourdes is currently completing her master’s degree in clinical nutrition. In October 2017, following Hurricanes Irma and Maria, Lourdes founded Alimentación Segura Infantil or ASI, an Infant and Young Child feeding program focused on increasing breastfeeding, leadership and training in marginalized communities in Puerto Rico.

 

 

 

Getting Breastfeeding Right from the Start: Enhancing Maternal and Newborn Competence

Catherine Watson Genna as we know,  is particularly interested in dyads with medical challenges to breastfeeding. In addition to mentoring lactation interns, she uses her clinical photos and videos in presentations to healthcare professionals on assisting breastfeeding babies with anatomical, genetic or neurological problems. Catherine currently participates in research, investigating biomechanics of the lactating nipple and aspects of sucking and swallowing in breastfeeding infants. Again no stranger to us Cathy has visited and spoken in Ireland on many occasions.

 

A Case for Normalizing First-Hour Hand Expression for All Mothers: Selective Studies Supportive of a Mother-Centric, Volume-Centric Approach to Improving Breastfeeding Outcomes 

Jane Morton has had a long, fulfilling career as a general paediatrician. She has also had a long-standing interest in breastfeeding, from understanding its clinical benefits to practical solutions for mothers having difficulty in providing breastmilk to their infants. Over the years, she has conducted research on human milk and breastfeeding and has designed and implemented systems and policies to help breastfeeding mothers. She produced award winning videos on this topic, including “Breastfeeding: A Guide to Getting Started”, “A Preemie Needs His Mother: Breastfeeding a Premature Baby”, “Making Enough Milk, the Key to Successful Breastfeeding” and “A Mother’s Touch, Breastfeeding in the First Hour”. She designed an educational website for expectant mothers for the goal of preventing common breastfeeding problems, www.firstdroplets.com. It is well worth looking at this site as it contains many nuggets useful to all of us.

 

 

Breastfeeding Policy and Advocacy 

Laurence Grummer-Strawn is the coordinator of infant and young child feeding at the World Health Organization. He is an epidemiologist who has published over 150 scientific publications. He is recognized internationally for his work on breastfeeding policy, and development of the WHO Growth Charts. Dr. Grummer-Strawn was the scientific editor of the US Surgeon General’s Call to Action on Breastfeeding. At WHO, Dr. Grummer-Strawn leads the Baby Friendly Hospital Initiative, the Code of Marketing of Breast-milk Substitutes, and the Global Breastfeeding Collective.

 

Litigation and Lactation: Protecting Breastfeeding in Legal Proceedings (Divorce, Immigration, Custody)

Liz Brooks is well known to us here in Ireland, having spoken at ALCI in the past. She is a lawyer/litigator and private practice lactation consultant who offers a lively explanation of the overlap between clinical lactation support, ethics, and the law. Breastfeeding helpers (like IBCLCs) can struggle with ethical, moral, and legal conundrums in their everyday work settings. With plain language and humour, Liz explains how everyone can work ethically and legally, and offers pragmatic tips for immediate use in daily practice. Great to hear Liz again as she is always worth an hour of anybody’s time – and of course the free gifts and chocolates!

 

Speakers covered a diverse range of topics during concurrent sessions including those shown below. The dilemma is always what to go to.

  • Adelante!: A Community-Based Approach to Improve Child Health in a Latinx Community (Paulina Erices, MS, IBCLC, RLC)
  • Breastfeeding Without Nursing: Reducing the Prejudice Against Exclusive Pumping (Fiona Jardine, MA (Cantab), LLM, MLS, ALC)
  • Breastfeeding Rates, Self-efficacy, and Satisfaction in Low-income Mothers (Wilaiporn Rojjanasrirat, PhD, RN, IBCLC)
  • Clinical Skills Session: Using Role Play to Identify Strategies to Provide Cultural Responsiveness and Sensitivity in Lactation Care (Stacy Davis BA, IBCLC, CLEC)
  • Clinical Infant and Young Child Feeding in Emergencies: Skills for the Lactation Consultant (Lourdes Santaballa BA, IBCLC, IYCFS, Aunchalee Palmquist, PhD, MA, IBCLC, & Angela Malloy, MAT, CLC, IBCLC)
  • When Knowledge is Not Power: Considering the Appalachian-American Cultural Power Code (Joni Gray, Ed.D, M.A., B.A., CLC, CLS)

 

I tried to choose to attend sessions that were relevant to the Irish context so while looking at specific communities in USA and other locations with no similarities to ourselves was interesting, it was generally not transferrable.

 

Meeting potential speakers is another reason to attend events, to see them in action! Meeting the big names in the Lactation field is always an honour and to be able to spend time with them chatting and sharing information is magic.

 

The big question I am always asked on returning from big events is often ‘ well, did you learn anything new?  The answer is always an emphatic yes – as learning comes in many forms.  It may be a tit bit of practical skill shared over a lunch table or a new way of looking at a familiar situation. There is always room to  learn and it is a sad day when someone feels they have nothing left to learn, even from the very familiar.

 

Conferences are about so much more than learning.  They are an experience for both mind and body. Cultural exchanges, shared anecdotes and case histories form the bulk of our social chatter around meal times and of course there is the opportunity to see the sights of other cities and experience different cultures. I thank the members of ALCI for giving me this opportunity.

 

Sue Jameson

 

 

 

 

 

MAINN Talk On BFHI by Anna Byrom Reviewed By Liz O’Sullivan

Anna Byrom of the University of Central Lancashire, a Lecturer in Midwifery, gave the first keynote talk on Day 3 of the conference, for which she received a standing ovation. She described some results from her PhD, an ethnographic study that she has been working on for the last 9 years. For her PhD, Anna explored the cultural impact of implementing the Baby Friendly Hospital Initiative (BFHI) in a maternity unit in the North-West of England. Her focus was on the impacts on staff but also the perceptions and views of families, given that the surrounding areas had a high prevalence of formula feeding. Given that she has been doing her PhD part-time, she was also able to observe changes in practice with the change in guidance in the UK that was introduced in 2012, which encouraged staff to focus on person-centred care.

Anna outlined key themes that she developed from her ethnographic data. The first she described was the environment and, in this case, it was likened to a fast-food restaurant as there was often pressure to free up beds and process women and babies through the system. The maternity unit was described as being very fast-paced, and the postnatal ward was described as being the last stop on a conveyor belt. Because the postnatal ward was so busy, women often shut themselves off and pulled the curtains around their beds. This meant that breastfeeding was not often visible on the wards. In addition, women often stopped breastfeeding when they had visitors, further decreasing the visibility of breastfeeding.

In spite of the fast pace and the background prevalence of formula feeding in the community, the Baby Friendly ideals were ingrained in the practice of the staff at this maternity unit. Anna constantly witnessed examples of infant-feeding education being prioritised and staff ensuring that they fit it into their day. Staff said that they just don’t even think about it anymore, it is simply an integral part of their job. The staff took time to help mothers with feeding and simply sitting with mothers as they fed their babies—as opposed to sitting over them—was highlighted as a particularly supportive activity.

The fact that the Baby Friendly ideals were ingrained in the practice of the midwifery staff was the dominant message from this talk and it was reflected again in the Q&A session. Anna was asked her experience of how the delivery of care changed in times when the unit was better funded compared to times when it was not. She felt that mothers and babies received better care when the unit was better staffed; however, even when the unit was short-staffed, the midwives still did their best to provide care related to breastfeeding, though they often felt/wished that they could do more. The most salient take-home message, for me, was that when breastfeeding is viewed as important by healthcare providers, they will do what they can to provide whatever support and care they can. It is not just the case of having a policy like BFHI in place that is important, the staff have to buy in to the policy and believe in the value of it.

 

Liz O’Sullivan October 2019.

Liz received a bursary of €100 from ALCI to attend the Nutrition and Nurture in Infancy and Childhood: Bio-cultural Perspectives MAINN Conference.

LCinPP Talk On Bottle Feeding by Susan Howard IBCLC reviewed by Pauline McLoughlin

The LC in PP in Conference Philadelphia this year was my first international conference to attend in all things breastfeeding; the “Breastars” were in attendance! Some attending the sessions, others giving sessions … and not to forget to mention my lovely Irish colleagues who made the whole experience very worthwhile and fun. Thanks to ALCI for a bursary to attend this conference.

The programme was full and intense, and my wits needed to be on full alert to take all the information in and process it. Given that it was all things lactation I was surprised to see on the programme a session entitled “Bottle Battles, Practical Tips for the Bottle Refusing Baby”, facilitated by Susan Howard IBCLC. Bottle battles at a conference for lactation consultants!? Following an informal chat amongst my colleagues I discovered that some IBCLCs do not as a rule help with bottle feeding problems, even with EBM. In the US where the maternity leave is relatively short many breastfeeding mothers have no other option but to bottle feed EBM as they return to work and want their babies to get breastmilk. I understand that US IBCLCs are more likely to work with bottle feeding dyads. As it turns out I had a call from a mother who was bottle feeding her baby and wanted help just before I left for America. She asked me tentatively if I took appointments from mothers who bottle feed. I asked her to fill me in. She described a 4-month long journey of frustration and failure (her words). She reluctantly finished her breastfeeding journey which was a very emotional for her and started to bottle feed formula to discover to her complete frustration and upset that her problems were not resolving. I felt I could not refuse to offer her help. To be completely honest although this session resonated with me, I thought to myself there was not too much to learn here! When Susan asked her audience to raise their hand those who felt competent and confident to work with bottle refusing babies, I raised my hand without hesitation, flush with the success of my recent consultation!!! OMG when I think of it… morto!!

The session was so well put together, interactive with lots of photos and props. I learned so much that I did not know! Thank you to Susan Howard IBCLC. Anyway, I am here now to share with you all 10 points that I picked up to help with families with “Bottle refusing Babies “

If you work in primary care or on the community, you are likely to have come across babies who play with the teat, chew or chomp the teat but manage to get the milk with the help of a fast flow teat. Or I imagine you have seen babies who appear to have soaking wet Babygro from milk spillage. Or you have encountered parents who have complained to you that it takes ages to feed their baby the bottle. You may find the weight gain is normal but are these babies feeding normally from a bottle? According to Susan, weight gain however should not be the only benchmark for feeding success. In transitioning to bottle feeding a baby should be able to accept a teat into their mouth with no gagging and suck from the teat in an organised manner and with no milk spillage.

First and foremost, in helping overcome the difficulties of transitioning to the bottle Susan would say you need to manage the expectations of the parents; one consult is not necessarily going to solve the problems. She tells families I cannot “make” your baby take the bottle. What we can do as helpers is figure out why there is difficulty with transitioning to a bottle feeding or why the baby is refusing the bottle and then help with a plan.

In figuring out the whys, she looks at the breastfeeding; she observes a breastfeed and watches for leaking, clicking, flow of milk, chewing or active sucking, nibbling, slipping off the breast.

She observes the baby in the same way we all do during a breastfeeding consult, looking for asymmetry, tightness, torticollis, palate shape, cheeks, sensitive gag reflex, hypotonia and hypertonia amongst other observations. All these factors may contribute difficulty transitioning to the bottle and may require other help like bodywork.

 

  1. Mother is in the best position to help their baby transition to the bottle effectively, not their mother or mother in law, child minder or friend. Mothers know their babies and babies trust their mothers.
  2. Hunger is not a great sauce. Babies who are fed and rested will be more regulated and less stressed. If the baby is hungry, they will get stressed, cry more, may have negative associations and develop in extreme cases oral aversions. Hungry babies are not motivated to learn
  3. Wake the baby’s body up: Do body warm-ups, assessing for tension in the neck and shoulders. Move arms up and down and open arms out and bring them together at the chest, talking and engaging the baby. Use lots of eye contact. Do exercises where the opposite body parts meet in the midline … e.g. arm meet the foot of the opposite side at the midline. Wake the baby’s mouth up: Oral massage, tap lips, massage TMJ, and massage palate. All exercises should be quick and playful and be led by the baby’s cues. Praise and encourage and do all of this before a teat has been taken out of the package.
  4. Encourage good baby posture for feeding, upright chest, back supported, hips flexed and positioned so that the baby can make eye contact too.
  5. Practice with empty bottle teat, and yes, no milk in the teat at LEAST AT THE START. Get permission from the baby to accept the teat into their mouth, stimulate or tap their lips with the teat, let them feel it. Touch it lick it praise them as they achieve these goals. Aim for hard palate. Sometimes mimic what you want the baby to do. Keep eye contact and let the baby hear the mother’s voice. Get the sucking skills right and then introduce milk in small amounts.Other ways to help baby suck is “Bait and switch” at the breast on to the empty teat when the baby relaxed and full. When babies are sleeping or drowsy and they “sleep suck” practice lots. Teach parents the visual cues for stress.
  6. Hold the bottle like a pencil, rest fingers on bottle collar and hand resting on chest. Support the jaw as needed. Stabilise the cheeks which helps with vacuum and support the jaw if there is chomping or jaw tremor. Practice when sucking to pull bottle teat slightly out so baby pulls it back into mouth. Discourage parents from bottle hopping or teat swapping.
  7. Success is defined by accepting the bottle into their mouth with a good seal no gagging and an organised suck with no spillage. It is not defined by taking an entire bottle.
  8. Use paced bottle feeding however Susan recommends not taking the teat out of the baby’s mouth in this instance.
  9. Tummy time improves all sucking skills by bringing the jaw and tongue forward. It encourages head/body extension. Roll into tummy time roll out of tummy time.
  10. Progress can and does stall, encourage parents to go back a step and reassure. Need to build into the consultation different stages of success, e.g. first step recognition of the teat, next cuing and opening wide then accepting teat. Following that, good lip seal, no gagging and organised suck. Parents may feel anxious to move quickly as there may be a time pressure for returning to work for example. Short 3 to 5-minute practice sessions 3 to 5 times a day. Pick times when baby is up for “play”.

Finally like all breastfeeding challenges it takes patience and practice and praise or positive feedback.

 

Pauline McLoughlin IBCLC September 2019

Pauline received a bursary of €200 from ALCI to attend LCinPP.

 

Annual International Meeting of the Academy of Breastfeeding Medicine in UK this October

ABM 24TH ANNUAL INTERNATIONAL MEETING

The 24th Annual International Meeting presented by the Academy of Breastfeeding Medicine features world-class speakers providing cutting-edge research and clinical information on current issues in breastfeeding medicine, spanning both maternal and child health. This year’s meeting is the first to be hosted in the United Kingdom and will be held October 16-19, 2019. Physicians, registered nurses, lactation consultants and other professionals will have the opportunity to continue their professional education in a highly respected, stimulating environment, while earning continuing education credits.

ABM’s Annual Meeting is the ideal context to engage in innovative workshops, address evolving issues and connect with an international organization of clinicians devoted to the promotion, protection and support of breastfeeding.

 

https://www.bfmed.org/2019-24th-annual-international-meeting

Case Study – Breastfeeding and Angelman Syndrome

 

Breastfeeding Challenges Faced by a Baby with Angelman Syndrome: A Case Study

by Caoimhe Whelan, IBCLC in Private Practice

 

Abstract

Introduction

This case report describes the breastfeeding and bottle feeding challenges faced in the first 6 months of life by baby Leo, who was subsequently diagnosed at 12 months with Angelman Syndrome (AS).

 

Main Issue

The main challenges that affected feeding for baby Leo (and which are perhaps typical of babies with AS) were:

  • Weak suck and poor tone
  • Delayed swallow reflex of 2 – 4 seconds
  • Poor suck swallow breathe coordination
  • Aspiration
  • Laryngomalacia with variable stridor

When Leo was feeding, the normal swallow reflex was not being triggered in time, so milk was spilling into his airway. This presented as coughing, wet noises and dribbling, but these symptoms were attributed to laryngomalacia.

 

Management

Despite help from myself and a Speech and Language therapist,baby Leo never managed to feed well at the breast and no improvements were ever seen. He was able to latch with a nipple shield, and did try to feed, but the delayed swallow caused him to aspirate and choke.

 

Conclusion

Attempts at breastfeeding for baby Leo and his mum Joan were unsuccessful and stressful as Leo’s delayed swallow prevented him from being able to coordinate suck swallow breathe and resulted in him aspirating on milk. It was important for Joan to understand why feeding was so challenging for Leo and to grieve for the loss of the breastfeeding relationship.

 

Introduction

I worked with baby Leo and his mum Joan over a 2-month period with a view to helping her transition from exclusive expressing to breastfeeding. However, Leo never managed to successfully breastfeed and always had difficulty feeding from a bottle. When he was 12 months old, he was diagnosed with Angelman Syndrome (AS), a rare and complex neuro-genetic disorder of chromosome 15 which prevents the normal expression of the UBE3A gene (needed for normal neurologic functions). AS is characterised by developmental delay, intellectual disability, lack of speech, sleep disturbances, seizures, movement/balance disorder, and a happy demeanour. Other associated characteristics include tongue thrusting, suck and swallow disorders, feeding issues in infancy, prognathia, mandibular hypoplasia, macrostomia (wide mouth) and frequent drooling.

 

AS affects 1 in 20,000 – 25,000 babies. It can be difficult to diagnose because its’ typical characteristics are not apparent during the first 6 months of life and it shares characteristics with autism, cerebral palsy and Prader-Willi Syndrome.

 

Angelman babies generally have difficulty breastfeeding and bottle feeding due to severe oromotor dysfunction  – dysphagia, poor suck swallow breathe (SSB) coordination, aspiration, tongue thrusting and hypotonia. Many fail to gain weight appropriately in the early months.

 

Leo’s diagnosis helped us understand his feeding difficulties. The main issues for him were a delayed swallow and aspiration.

 

My client Joan O’Herlihy has given written consent for publication of this case study and photographs.

 

History and Observational Assessment

Leo was born vaginally at 36 +4 to his 38-year old mother Joan, gravida 2, para 2, following induction due to prolonged spontaneous rupture of the membranes. He weighed 2.86 Kg and his Apgar score was 9.

 

Leo struggled to feed at the breast in the first few days in hospital due to a poor suck and sleepiness. He was supplemented with formula until his mother established expressing. Leo was discharged from the hospital on day 3, bottle feeding infant formula and human milk.

 

Baby Leo continued to have difficulties latching and transferring milk at the breast. A healthcare professional identified an anterior tongue tie and on day 15 (38+5), a scissors frenotomy was performed. The provider suggested that Leo had a ‘short tongue’ which could potentially impact breastfeeding.

 

Later that day, Leo was admitted to hospital due to sleepiness and lack of interest in feeding. He was diagnosed with viral meningitis and a urinary tract infection. During the 2-week hospital stay, Joan expressed and bottle fed. Baby Leo was, however, slow and sloppy feeding from the bottle.

 

Following discharge, Joan continued expressing and bottle feeding, and occasionally tried breastfeeding, without success.

 

 

Initial Consultation

I visited my client Joan when Baby Leo was 7 weeks old (4 weeks corrected). The purpose of my visit was to help her transition from exclusive pumping to breastfeeding. I felt concerned about Baby Leo as soon as I saw him, as it was very apparent that he was underweight. He weighed 3.54 Kg, just 680g above his birth weight.

 

We decided to try feeding him at the breast using a nipple shield. My notes from the consult state:

 

“It took some time, but Baby Leo eventually latched.  He seemed to have difficulty swallowing and coordinating SSB. He was either trying to feed or breathing. Milk kept spilling back out of his mouth. This was distressing for his mother.”

 

Joan then attempted to feed Leo expressed human milk in a bottle. This was equally challenging – he struggled to coordinate SSB and there was a lot of milk dribbling from his mouth. I determined that Leo was ‘not tolerating oral feeds.’

 

Normally during a breastfeeding consultation, I do oral and structural assessments of the baby. However, in Leo’s case I didn’t as I felt that putting my fingers in his mouth might contribute to oral aversion. And given that he was so underweight and tense, I didn’t feel it would be appropriate to do a structural assessment. My notes from the consultation state “Baby Leo appeared to me to be thin and stressed. Not a happy baby.”

 

Management

My advice to Joan following the consultation was

  • Bring Baby Leo back into the hospital where he was treated for meningitis.
  • Don’t attempt breastfeeding again until Leo is stronger and gaining weight appropriately.

Baby Leo was admitted to hospital later that day and kept in for 6 days.

During that time, Joan expressed and bottle fed. Leo was seen by a Speech and Language therapist and a FEES (fibreoptic endoscopic evaluation of swallowing) study was done.  Leo was diagnosed with Laryngomalacia. Symptoms noted were ‘SSB incoordination’, ‘stridor’ and ‘inefficient feeder’. Joan was shown how to bottle feed using the elevated side lying technique, and some improvement in feeding was noted.

Following discharge from hospital, Joan continued to express and bottle feed. She found it challenging – especially the long feeding sessions and the ongoing disappointment of failed attempts at breastfeeding.

 

Follow-Up Consultation

I saw Joan for a follow-up visit when Leo was 10 weeks old, again with a view to transitioning to breastfeeding. We tried Leo at the breast, and while he was willing, it seemed too challenging for him. He latched well with a nipple shield, but his SSB coordination was poor and feeding attempts resulted in respiratory distress.

I supported Joan to continue expressing and reassured her that Leo would probably feed at the breast when he was ready – basing this assumption on what we know about laryngomalacia; that often these babies don’t breastfeed well until around the 6 month mark.

 

Outcomes

Baby Leo never fed successfully at the breast. Joan continued to express and bottle feed until Leo was 6 months old, and she did occasionally attempt to feed him at the breast, but it was always stressful for both of them. Bottle feeds were slow and Leo was a sloppy feeder. He would often choke and cough during feeds. No great improvement was ever seen in feeding technique.

 

When he was almost 12 months of age, Baby Leo was diagnosed with Angelman Syndrome.

 

This information closed a loop for me and helped us understand why Baby Leo struggled so much with breastfeeding – because he just wasn’t able! Babies with Angelman syndrome generally struggle to breastfeed and bottle feed due to severe oromotor dysfunction (dysphagia, tongue thrusting, aspiration and poor SSB coordination) and hypotonia.

 

Two months afterLeo’s diagnosis, a videofluroscopy (VFS) revealed a neurological swallow profile;  he had a delayed swallow reflex of 2 to 4 seconds and was aspirating on all fluids. This explains the coughing and choking that Leo often did during feeds. He was trying to expel milk that had gotten into his airway.

 

 

Discussion

When I searched the literature for studies on Angelman syndrome and breastfeeding, I didn’t find any.

In this case presentation, the main feeding difficulties that Leo had in the early weeks were (and which are perhaps typical of babies with Angelman syndrome) are:

 

  • Weak suck and poor tone
  • Delayed swallow reflex
  • Poor SSB coordination
  • Aspiration
  • Laryngomalacia with variable stridor
  • Slow and sloppy bottle feeding
  • High palate and short tongue

When he was feeding, the normal swallow reflex was not being triggered in time (normally it is triggered by presence of a bolus at the valleculae at the base of the tongue), so milk was spilling into his airway. This presented as coughing, wet noises and dribbling, but these symptoms were attributed to laryngomalacia.

 

As an IBCLC working with this dyad, we didn’t get the outcome that we had hoped for. Leo never fed well at the breast. However, I gave Joan emotional support – I wasn’t able to ‘fix’ breastfeeding, but I acknowledged her challenges and I listened, and I continued to follow up with her by email.

 

As IBCLC’s we cannot underestimate the power of providing emotional support in difficult situations and holding space for a parent who is struggling. We give them the message “Yes, I know this is hard for you. I am here to listen and support.”

 

The loss of a breastfeeding relationship for a parent can be heart-breaking and can mean feelings of deep sadness and grief.  Joan said

“I longed for the connection of breastfeeding, but he just couldn’t.”

 

However, understanding why Baby Leo couldn’t breastfeed has helped Joan. And seeking answers as to why it took so long to identify Leo’s feeding difficulties has been important for her. She suggested I write this case study and I am grateful to her for that, as it has been a huge learning opportunity for me. I also hope that it will help her gain some clarity on the multitude of issues she and Leo faced in his first year of life.

 

To read more about baby Leo and Angelman Syndrome, you can follow Joan’s blog at https://www.facebook.com/angellionleo/

Funding

Funding: None.

 

Conflict of Interest Statement

Conflicts of interest: None.

 

References

Journal

Van Buggenhout, G., Fryns, J.P. (2009). Angelman Syndrome (AS, MIM 105830). European Journal of Human Genetics, 17(11):1367-1373.

Website

Angelman Syndrome Ireland. (2012). Parent Information Leaflet. http://www.angelman.ie/

Journal

Williams, C.A., Driscoll, D.J., Dagli, A.I., (2010). Clinical and genetic aspects of Angelman syndrome. Genetics in Medicine 12, 385-395.

Journal

Simons, Jeffrey P., Greenberg, Laura. L., Mehta, Deepak. K., Fabio, A., Maguire, Raymond. C., Mandell, David. L. (2016). Laryngomalacia and Swallowing Dysfunction in Children. Laryngoscope, 126(2): 478-484.

Website

U.S. National Library of Medicine, (2015). Angelman Syndrome. https://ghr.nlm.nih.gov/condition/angelman-syndrome

Conference Sep ’19: Celebrating 30 Years Of ALCI

2019 marks the 30th anniversary of the Association of Lactation Consultants of Ireland (ALCI), and this year’s conference will be an extra special one to celebrate! The Annual All Ireland Conference will take place on Friday 27thand Saturday 28th September at the beautiful Radisson Blu Hotel, Co. Limerick. The date, as usual, coincides with National Breastfeeding Week and this year’s keynote speaker is renowned international speaker and author Kay Hoover. Booking is open now and timetable is here (ALCI Conference 19 Timetable).

 

Kay worked as a lactation consultant in private practice, as well as for the Philadelphia Department of Health, for The Pennsylvania State University, and the Pennsylvania Department of Health, and at many hospitals.  She currently works at a small community hospital. She has presented workshops internationally and is a co-author of The Breastfeeding Atlas.

 

Other speakers at the conference on Friday will include Dr. Denise O’Brien and Dr. Tanya Cassidy. There will be workshops on topics such as mastitis, induced lactation, colostrum harvesting, private practice, GDPR and tongue tie. Friday will also include a party to celebrate ALCI’s 30th Anniversary. On Saturday, there is another full line-up including Dr. Lenore Goldfarb IBCLC and Dr. Elizabeth McCarthy Quinn IBCLC.

 

Lunch and refreshments are included in the registration fee. The (early bird) prices are €135 for ALCI members (for both days) or €95 (for one day) and €185 for non-members (for both days) and €145 for non-members (for one day). Full-time undergraduate students, in relevant professions, may register for a fee of €40 per day. This year we have a special discount for members who are over 65 (please contact ALCI for details).  10 IBLCE CERPs have been awarded and NMBI CMUs have been applied for.

 

As part of the conference, two Annual Scholarships will be awarded to help first-time IBLCE candidates, and a third scholarship will be awarded to a member who is re-certifying. Information is available here.

 

Conference participants are invited to submit research and practice posters for display, discussion, and awards.  Information is available here.

 

With 8 plenary presentations,9  workshops and a few surprise ‘nuggets’ over the 2 days, plus research posters, networking, new product information, craft stalls and much more, the ALCI Annual Conference is the premier event for health workers and volunteers involved in assisting breastfeeding families in Ireland.

 

Booking here.

Breastfeeding and Feminism Conference 2019 – Write Up by Ger Cahill

Reflective Piece from Breastfeeding and Feminism Conference, Roots and Wings, Looking Back, Looking Forward held in North Carolina, Wednesday 20th March to Friday 22nd March, 2019.    This conference is organised by the Carolina Global Breastfeeding Institute at the University of North Carolina, Chapel Hill.

By Ger Cahill, IBCLC and ILCA Board Member.

 

I was again grateful that ALCI supported me in being able to attend this conference,  to fill the days between the Lactation Consultant Private Practice Conference in Philadelphia and my board meetings for ILCA.

 

As it was my second time to attend this conference, I was able to give more thought to the reasons why this conference exists in the first place, and I have been reflecting more on that than on the actual content since I returned.

 

 

The title said a lot about the content of this conference, which ranged from Leah Margulies and Margaret Kyenkya talking about the early days of the Nestle Boycott, the Innocenti Declaration and the beginnings of Baby Friendly, to a conversation with a 6 year old about her perspective on being a long term breastfeeder.

 

There was a lot of storytelling at this year’s conference which was encouraged by the attendance of keynote speaker Donna Washington.  She encouraged us all to tell our stories and not to be afraid to do as stories are what help to build communities.  There were ‘essays’ on topics such as “is the relationship important to providing effective breastfeeding support” by Louise Duursma, Elaine Burns and Nicole Bridges and Tanefer Camara speaking about trying to advocate for breastfeeding in the face of homelessness and gentrification.  Shela Hiraani spoke about her experiences in a disaster relief camp and Marthy Paynter talked to us about  setting up a non-profit to serve the Perinatal needs of criminalised women.  All of these stories were hugely inspiring.

 

However, what I keep coming back to is the very beginning of the conference when the following words from the conference handbook were considered so important that they were read out and then subsequently referred to constantly during the rest of the conference:

 

“To ensure that we create an inclusive environment for sharing our ideas and practices we invite everyone to:

  • No fixing, no saving, no setting each other straight
  • No shaming others
  • Interact in ways that reflect the inherent worth and dignity of each person
  • Honor the contributions and needs of those who have been historically marginalised and strive to be welcoming
  • Value diversity in thought, value and perspective
  • Welcome and respect the contributions of those who share views that are different from your own
  • Assume good intentions by others and have good intentions ourselves
  • Be curious, appreciative and informed about perspectives that differ from our own
  • Communicate with and about each other openly, kindly and respectfully
  • Describe our own opinions and experiences using the word “I”, mindful that our views may not be shared by others
  • Encourage and support the participation of everyone in the way that feels most comfortable for them.

 

To see written down some of these ‘rules’ of what I would consider to be normal behaviour initially took me by surprise. But I have been reflecting on them a lot since and examining my own behaviour;  yes it is ‘normal’ and ‘expected’ that I behave in the ways above, but do I always?  It has really resonated with me that I fall short on some of these, but that I view them as both normal and also something that I would strive for at all times in my interactions with people.

 

Believing in equity and diversity and being free to state that is something different to actually living it.  I can hear myself saying something about Travellers in the past as I write this and I am cringing.  My inherent bias is strong and I think this is what has been the learning for me from attending this conference.  To acknowledge that I have biases and that I always need to stay aware of them and not to deny that I have a bias but to work at understanding where that bias comes from in the first place.

 

I attended one breakout session called ‘Breastfeeding our children for the health of our nations: Healing Intergenerational tauma through lactation support’.  I attended because my colleague on the ILCA board Stephanie George an indigenous midwife and IBCLC from Canada was presenting, but right through the talk I was thinking about Irish Traveller women and the harm that has been done to them with our paternalistic ‘fixing’ of their problems.  I feel that in the future generations of young Irish Traveller women will have to heal from not being ‘allowed’ to breastfeed and there is much to be learnt from Indiginous communities and their belief that trauma takes 7 generations to heal and that there is lots of anger and hurt going to be manifested in this particular situation and we need to start preparing ourselves and not being defensive about it but accepting that this will be their truth.

 

This is a busy conference with lots of round tables and panels, so it is hard to give an overview of lots of the topics,  there are many impressions and many still to be reflected on, and yet I still come back to the the opening statements that this conference is for lots of practitioners from different disciplines,  policy makers, programme developers, educators, IBCLC’s, peer supporters and we all need to be able to communicate so that we can “identify and respond to the social, economic and political contexts that affect and shape infant feeding practices and experiences that enhance breastfeeding equity across populations and communities”.

 

This conference exists because people like Miriam Labbok recognised the inequities that exist in all communities when it comes to breastfeeding.  Meeting, discussing, sharing, having fun with people from a diversity of backgrounds, disciplines, experiences and cultures is amazing and I really enjoyed the networking as well as the chatting.  I also have been exposed to different viewpoints and new ideas and this leaves me with a sense of anticipation and excitement about the future of breastfeeding.

 

Ger Cahill received a €200 bursary from ALCI towards the costs of attending this conference, and wrote this article as part of the agreement. 

Review of LCinPP Talk on Perinatal Mood and Anxiety Disorders by Jabina Coleman

I attended the 2019 Lactation Consultant in Private Practice Conference in Philadelphia recently for the first time. It was 3 days of great really meaty presentations that provided me with many ‘lightbulb ‘ moments.

 

The conference opened with a truly excellent presentation by  Jabina Coleman, LSW, MSW, IBCLC.  She spoke on Perinatal Mood  and Anxiety Disorders (PMADs) -What Lactation Professionals Should Know. Jabina, an excellent speaker, opened saying , though we need not be psychoanalysts we are in the frontline and our Scope Of Duty means we need to acknowledge mental health of infant and mother. We need to be using our interactive counselling skills and assess how PMADs affect breastfeeding.

 

Jabina brought us through the various theories of PMADs, from postpartum blues to pp psychosis, giving us lists of signs and symptoms, how the mother may appear, how she may feel she is doing and how she might express herself. A mother with obsessive compulsive disorder (OCD) may realise her thoughts are ‘crazy’. A mother with postpartum psychosis does not realise this , her family members may say ‘things are very ‘off”. She talked us through how we might approach the subject… for example, with a mother who has OCD we might ask..”how do you feel about baby?”,  “Are you having any scary thoughts.” She encouraged us to let mothers know that ‘thought does not equate action’.

 

Jabina asked us to consider the dilemma of medication for PMADs. Do we ..expose baby to medication through milk, expose baby to adverse effects of an untreated depression or have the mother take the antidepressant med and wean the mother off breastfeeding.

 

When a mother says ..’the thought of harming myself has occurred to me ‘ we must follow up. Jabina alerted us to the fact that screening tools such as Patient Health Questionnaire or Edinburgh Scale are not diagnosing. We might say to a mother..I am going to reach out to your health professional on your behalf. A depressed person will probably not be able to make necessary calls . By us normalising the symptoms with the mother she is more likely to seek help.

 

Jabina gave us all the definitions, the lists of symptoms and the statistics. However she enriched this excellent presentation by referring to her own experience of mental health issues after birth trauma when her first baby was born, describing how well she would have appeared to onlookers…’I had my new baby, my car, my partner, my apartment and my degree. But each time I went home to my baby I sat on the bed and cried.’ This image added power, understanding and  humanity to her words.

 

The statistics of hospitalisation of mothers, suicide and infanticide are stacks of sadness and tragedy. We need to include a section  about mental health in our assessment forms for consultations and normalise the subject. If mothers feel heard and we respond appropriately we can perhaps prevent tragedies and reduce  lost lives.

 

Mairead Murphy IBCLC March 2019

Mairead received a bursary of €200 from ALCI to attend LCinPP.