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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




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.



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.



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.



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.”



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.



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.




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


Funding: None.


Conflict of Interest Statement

Conflicts of interest: None.




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


Angelman Syndrome Ireland. (2012). Parent Information Leaflet.


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


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.


U.S. National Library of Medicine, (2015). 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.


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.


ALCI President Sue Jameson’s Trip to Lithuania

Last week I had the privilege of visiting Lithuania as a guest of the Lithuanian Lactation and Breastfeeding Consultant Association for their Annual Study Day. I was lucky to have two days in Vilnius before the Conference on Friday.  I was looked after by the President Daiva, who some of you will have met at ALCI Annual Conference in Maynooth last year, and Asta, another of the Committee who had previously spent 6 years in Dallas with her family. To have two such excellent translators at my disposal was a total gift as we were able to go over my presentation and fine tune the translation to fit.  It is interesting in the Lithuanian language that a full sentence often represents a single word in English e.g. there is no word for ‘siblings’ and so it translates into ‘other brothers and sisters who have the same parents’.


The flights to Vilnius arrive late Tuesday night and it was a welcome sight to see a friendly face holding a sign that read “Sue J”! Asta dropped me to my room – just off the main street in the Old Town,  a delightful warren of streets selling the three things Lithuania is famous for – amber, wooden toys and linen. English is widely spoken and the city is geared for tourists.  It is easy to walk around and to find your way from galleries, to museums, coffee shops and of course the amber sellers. Public transport is cheap  – €1 for a bus journey anywhere, including back to the airport.



I spent the first day doing a walk about with Daiva and her gorgeous wheaten terrier Dohreh. Dogs were allowed into just about everywhere and often a dish was provided for her too. As Daiva needed to prepare her presentation for Friday ( I was relieved to see that last minute-ism happens here too!), I spent the evening preparing my presentation –not for Lithuania, but on GDPR for Cuidiú in-service training for Breastfeeding Counsellors on the Sunday when I arrived back!  Never a dull moment – not even when it’s GDPR!


On Thursday I spent the day sight seeing and in the evening after work Asta collected me and we went to visit the fairytale castle of Trakai, set on an island in a large area of lakes and wetlands about 25km from the city. It was magic to walk around it and see the sun setting over the lakes. We sampled the local foods of the Karaim people who make up one of the many nationalities represented in Trakai. Small wooden homes exist today as they would have since earliest times and the local foods are all cooked fresh to order. My choice was Kibinai  – traditional pasties filled with mutton and onion. Just like a Cornish pasty.  A notable feature of Trakai is that the town was built and preserved by people of different nationalities. Historically, communities of Karaims, Tatars, Lithuanians, Russians, Jews and Poles lived here. The majority now are Lithuanian and Polish with some Russians and a handful of Karaim families, who run the local restaurants.



So finally Friday arrived and I had to remind myself that this was a speaking engagement and not a holiday – although it was brilliant to have a couple of days to see the city. Daiva had asked me to present a shortened version of a talk I gave at the ALCI Conference last year, “The 3Bs – Brain, Biome and Breast” and we agreed to do it in two parts to allow the translators a break and to have a cuppa and mid morning break. The members of the Association in Lithuania are predominantly Doctors – both Family Doctors and hospital staff.  I was delighted to also meet a group of Doulas – a really new addition to the care available in Lithuania. They were so pleased to identify the words Doula and Kangaroula in my presentation! I told them I had met Nils Bergmann on many occasions and they were asking many questions about his work. I invited them to come to Ireland at some stage too! Only a handful of  IBCLC’s that I met had come through Pathway 3 – the non-medical/recognised healthcare profession route. The paediatric community was strongly represented in the audience with one of the Country’s leading Paediatricians also speaking that day.  The programme for the morning covered the following areas:


  1. As a family doctor, how to recognise signs in mother and baby that breastfeeding is not going well,
  2. Practical aspects of anatomy and physiology and lactation outcomes – this presentation was relayed via Skype from a Lithuanian colleague based in Geneva and we had live Q & A following the presentation.
  3. Differential diagnosis of jaundice and identification of normal Vs abnormal situations with jaundice. An interesting over view of this was presented by the Neonatologist Dr Dalia Stoniene and it over ran significantly!
  4. The next speaker was due to be me but due to the time over run I offered my slot to dental specialist Dr Laura Linkeviciene. She gave us a super presentation on feeding the baby with Cleft Lip or Palate or both. They have produced a lovely book of which I have a copy (in Lithuanian) to help parents talk about this subject and prepare for surgery. They also make use of palatal obdurators to encourage feeding at the breast wherever possible and using all the tips and tricks we already have at our disposal.
  5. My presentation – which was seamlessly translated slide by slide while spoke in English. Most of the audience could follow the English as long as I didn’t go too far ‘off piste’ and over stress my poor translators too much!  I can’t thank them enough for their faithful rendition of my talk. It was well received and I had a number of questions after the presentation. We broke half way and had a three minute refresher break where we all danced to Shakira’s Waka Waka – this time for Africa. It certainly go us livened up!
  6. After the lunch break there were three rotating workshops covering (i) Assessing position and attachment (ii) Assessing a breastfeed for good milk transfer (iii) Relaction if breastfeeding has been interrupted .

These sessions were presented by a mix of community based  IBCLC’s and medical/hospital based IBCLC’s. I sat in on them all and while there was no translation, the hands on demos were very familiar to me as was the identification of poor suckling from Youtube clips of actual mothers. The idea was that each group would identify and suggest remedies for the various presented problems.  Really good hands on learning and sharing of information. Not surprising at all was that the community-based doulas and other volunteers scored the best in all three hands on situations because they see many more babies past the early days.


So what was the most significant take away from my day – one very interesting statistic; when hospital stays were reduced to 48 hours instead of four days, their breastfeeding rates began to fall. They attribute falling rates in Lithuania to this one practice.  They too value community-based support and feel that they don’t offer sufficient follow up to the early discharge dyad. Food for thought indeed.


So, as my flight home was not till Saturday at 11pm, I found myself with another day to complete my tourist experience in Vilnius.  No visit to Vilnius is complete without a stroll through Uzipus. The self-proclaimed “Republic” of Užupis” is Vilnius’ Bohemian and artistic district. It has its own anthem, constitution, president, bishop, two churches, the Bernadine Cemetery – one of the oldest in the city -, seven bridges, and its own guardian called The Bronze Angel of Užupis, who was put in the centre of the district in 2002. Currently, there is a large mirror mosaic egg at the foot of the statue – Easter is only around the corner.


My final stop was to the Cat Café where a dozen assorted ‘rescue’ felines present themselves to be stroked and cosseted while you have coffee and cake. Divine for those who love cats!


Good food, easy access around this beautiful Capital City of Vilnius would make it a definite short break stay for anyone who loves exploring old cities and their heritage.  Thank you to the LL&BCA for hosting me and showing odd their beautiful city. I’ll be back!


Thank you to Sue Jameson for this article. Sue did not receive funding from ALCI to attend this event.


‘LGBTQ+ and You’- Write up of LCinPP Talk by Stephanie Wagner

‘LGBTQ+ and You – Dispelling Myths, Understanding Terms and Sharing Cases to Create an Inclusive Environment for ALL Families to Optimise out Care!’

Stephanie Wagner, BSN, RNC, IBCLC, RLC, speaking at the 2019  LLCinPP Conference in  Philadelphia


Write up by Caoimhe Whelan, IBCLC and ALCI Council Member


This was one of my favourite talks of the 2019 LCinPP conference. I had expected that I would enjoy it as I met Stephanie at LCinPP last year, and she is an all-round wonderful person. But I hadn’t expected that I would learn so much, or that the talk would make me contemplate some of my own biases and prejudices (which I have to admit, I wasn’t aware I had). It made me consider the importance of language in regard to gender and identity in a new way, and how I might make some changes in the words I use and the assumptions I am inclined to make about people, particularly in regard to parenting and infant feeding.


Stephanie lives in Harlem, New York, and works part-time as a nurse and in private practice as a lactation consultant. She is a lesbian and a cis-gender female, and many of her clients come from the LGBTQ+ community. Stephanie spoke to us about how language is constantly changing to match society’s need and evolution, and she gave us an overview of many of the new terms that have evolved over the last decade to describe gender identity and sexual orientation.


Gender identity is one’s concept of being male or female, or neither (gender fluid or nonbinary). Our culture conditions us to think only in terms of male or female, but the reality is that some people do not identify as either. And we cannot assume that just because someone appears to be male or female, that that is how they identify. Some of the terms relating to gender identity that Stephanie explained to us were


  • Cisgender – gender identity matches the biological sex assigned at birth.
  • Gender Queer – Gender is outside strict male or female binary. May exhibit both male and female qualities, or neither.
  • Gender Expression – How we express our gender identity, eg clothing and hairstyle.
  • Gender Non-Conforming (GNC) – Express gender outside traditional norms associated with masculinity and femininity.
  • Gender Neutral – Prefers not to be described by a specific gender.
  • Gender Reassignment – Confirmation of new gender by taking medical steps (eg surgery or hormone therapy), Transgender.

For many of us, these terms are confusing. But Stephanie reassured us that it’s ok to be confused! What matters is being open to learning and being prepared to just ask if we are not sure how an individual identifies or likes to be addressed. See each person as an individual and meet them where they are at.


Stephanie then went on to talk us about the acronym ‘LGBTQ+’. She explained the terms that it encompasses and the significance of the ‘+’, represents everything on the gender/identity spectrum that words and letters can’t describe. Over the past 10 years ‘LGBTQ+’ has expanded to ‘LGBTQQIP2SAA+’ as new language has evolved:


  • Lesbian – Female who is attracted to other females
  • Gay – Male who is attracted to other males
  • Bisexual – A person is attracted to people of the same gender or opposite gender
  • Transexual – People whose gender identity or gender expression differs from the biological sex they were assigned at birth. The gender after the word ‘trans’ is the gender that that person is now. Eg a trans man identifies as a man now.
  • Queer – An acceptable umbrella term for the overlapping of biological sex, gender identity and gender expression
  • Questioning – Unsure of where one falls on the spectrum
  • Intersex – A person born with biological sex characteristics that are not associated with traditional male or female anatomy. Previously referred to as “hermaphrodite” and make up approximately 1.75% of the population.
  • Pansexual – A person who is attracted to people of all genders and sexual identities, “attracted to qualities rather than packaging”
  • Two Spirit – A Native American/Indigenous/First Nations term for people who have both a male and female spirit within them
  • Asexual – Someone who has little or no sexual desire
  • Ally – A person who is not LGBTQ+ but who uses their privilege to support LGBTQ+ people and support equality.


Knowing these terms means we can avoid ‘misgendering’ – this was a new word to me. According to Caitlin Dewey of The Washington Post, “Misgendering isn’t just a style error. It’s a stubborn, long time hurdle to…acceptance and equality, a fundamental refusal to afford those people even grammatical dignity.”


Stephanie implored us to Consider each person as an individual, Remember the importance of pronouns and to Allow the space to create and accept the language and the identity that each person shares as their truth, with no limits, no rules and no judging.


She went on to describe a case study where she helped a gay male couple establish a nursing relationship with their adopted baby daughter. The couple chest fed their daughter using feeding tubes and expressed milk from the surrogate mother. You can listen to Stephanie talk about this case study in this Breastfeeding Outside the Box podcast


Stephanie gave us the following definition for chest feeding:


“Term used for either anatomical, psychological, sexual or gender reasons for any person who considers their nipples (or lack thereof) to be part of a chest and not a breast and uses that part of their body to comfort and/or nourish a baby.”


And she gave us examples of where it might be a more appropriate term to use than breastfeeding eg as in the case study above, where gay dads are nurturing their baby, a cis gender woman after breast surgery, a trans man after top surgery or a cis gender straight dad. I’ve always been bit resistant to the term ‘chest feeding’, I suppose because it’s a new word that I don’t feel comfortable with and because I struggled to get why it mattered that we use it. But listening to Stephanie really helped me understand why it matters that we use the term where appropriate and that it doesn’t in any way erase the word ’breastfeeding’. This expansion of the terms around nursing is a positive and is something that enables us as breastfeeding supporters to be inclusive and to be respectful to how people identify.


For us as lactation consultants, the main thing to remember is that whatever kind of family or individuals we find ourselves supporting, it’s all about the baby, a baby who needs to be nurtured, loved and fed, irrespective of their parents’ gender identity or sexual orientation.


Stephanie’s closing nuggets of advice for us as lactation consultants were:

  • Don’t assume anything about anyone!
  • Ask questions sensitively and respectfully
  • Show compassion
  • Act like an inclusive practice eg look at the language on your website
  • Practice the language
  • Reach out to your LGBTQ+ community
  • Be part of social change and challenge homophobia every day in every way


“It’s all about the baby and how best to meet a family where they are.”


Caoimhe Whelan, IBCLC ALCI Member received a €200 bursary from ALCI to attend the 2019 Lactation Consultant in Private Practice Conference in Philadelphia.



Review of ‘The Positive Breastfeeding Book’ by Amy Brown

‘The Positive Breastfeeding Book – Everything you need to Feed your Baby with confidence’ by Amy Brown 

ISBN 978-1-78066-460-6


Review written by ALCI member Sorcha Nic Lochlainn.


The Positive Breastfeeding Book is by the clearly passionate and knowledgeable Professor Amy Brown and is a genuinely helpful and informative resource for breastfeeding mothers and supporters everywhere.


The positivity starts before you even open it, with bright, colourful writing, a little “you can do it” message and the tagline “Everything you need to feed your baby with confidence”.  It pretty much does what it says on the tin, imparting knowledge, confidence and inspiring stories in women’s own voices on every page.


Every chapter is thoughtfully laid out, with a myriad of information on common and not so common experiences. There is little judgement on these pages, but there is encouragement to think about all the reasons behind breastfeeding challenges and it definitely carries the message of “a breastfeeding solution for a breastfeeding problem” throughout.


The author gives solid information on normal newborn behaviour, growing babies and chapters like “How can family and friends support you” give helpful tips on getting the people around you to support you in a meaningful way, and are a great way of getting away from the “giving a bottle is helping” mindset.


The chapters on newborns, troubleshooting, complications and getting support offer a gentle, consistent and compassionate message, letting women take charge of their breastfeeding journeys without coming across as preaching or overly judgemental.


Chapters on feeding premature babies and multiples, relactation and LGBTQ feeding and other more specialised issues are interesting enough for the general reader but contain great information and resources for people in these more complex situations.


The book ends with chapters about introducing solids, introducing formula and ending breastfeeding. The formula chapter gives great information, and cuts through the nonsense to offer real advice. I like that it doesn’t shy away from this topic, rather introduces the reader to the political and social complexities of formula feeding and it’s marketing.


On the downside, this book is very text-heavy, and I imagine in the fog of new-babyhood it might seem a little overwhelming.  Some bullet boxes or similar might help those in the middle of those struggles.


There are no pictures apart from head shots of some of the contributors, and this is where the book really falls down. It doesn’t need necessarily the traditional step-by-step pictures of other breastfeeding books, but some pictures of mothers and babies in all situations would enhance the books message that breastfeeding is for everyone. The cover picture is of a baby feeding, but there is no mother – and I personally really dislike this disembodied breast type of picture. These are pretty minor quibbles, in the overall context of this great book.


One of its biggest strengths is in offering women further resources like helplines, web-based supports and IBCLC information, and the advice to go to breastfeeding groups is repeated in almost every chapter – reinforcing the concept that support is central to successful breastfeeding. I would not hesitate to recommend this book, it is a shining light of positivity, with almost every possible topic covered, or at least mentioned, all in a very breastfeeding focused way.