Content warning: baby loss/stillbirth/lactation after baby loss. There is a photo at the end of this post.
You spend time preparing for them. Studying childbirth, hypnobirthing, breastfeeding, harvesting colostrum, bouncing on the birthing ball, helping encourage baby into the correct position, buying all the essentials you require and all the ones you desire.
When I heard those words – there is no heartbeat – my world fell apart. I did not expect to find joy in the days that followed and yet I did.
Upon hearing those words you enter a whole new world of information – there are new rules.
Rules I did not study – trusting the health professionals around me to educate and guide me. Trying to digest what I could while adjusting to navigating this new landscape.
I was 39 weeks pregnant, having regular false starts to my labour and desperate to meet my baby soon. Unable to walk far with pelvic girdle pain and all the usual aches and pains you get in the third trimester, I was ready. I was harvesting colostrum just in case – my first son had to go to special care at birth, missing the golden hour and having to agree to formula if required. While donor milk is now available, expressing helped give me a purpose. I was preparing for my baby in every way I knew how.
While we knew that we had lost our baby – he still had to be born and the drug options were slightly different than what we covered in my antenatal class. While I was induced the amazing midwives did what they could to keep my labour as non medicalised as possible. I discussed my wishes to be mentally present – knowing how precious meeting my sleeping baby would be and my pain relief options were discussed in relation to my needs.
I should add that the second you lose your baby – you get 5 star treatment. Everyone wants to help in any way they can but no one can bring your baby back so they give you all the comfort and support they can. Thanks to the charity Simba and the staff’s amazing fundraising the labour rooms are amazing and kitted out.
Some women say they prepare more for birth than the baby. This was so true for me. It also feels cruel to birth a baby who you know you have lost – however this process was extremely cathartic for me and I was able to heal some wounds from my previous labour.
I expressed the wish to save some milk to make into jewellery – as a memento, perhaps with a lock of his hair. A kind midwife suggested I could express drops of colostrum and put them onto R’s lip as a gesture. I was keen not to miss any opportunities and make all the memories I could.
Other midwives were concerned that expressing would encourage more milk to come in – how would this affect me and could it cause mastitis?
I also got offered some medication to help suppress my milk – not being in a place to think straight, my friend advised me to check the side effects. We had learnt the BRAIN acronym in antenatal class and unable to decide I stuck to the N for ‘do nothing’. Breastfeeding my firstborn had been such a challenge and I was so convinced I would be better educated this time. Whether to suppress my milk with meds was the first real CHOICE I could realistically say no to.
I was hesitant to take any drugs I didn’t have to. I had just spent 9 months nauseous so why would I take a drug that I didn’t have to with that side effect?
My caregivers were concerned – a postpartum Mum grieving her baby with her milk coming in. Would that be too much? I knew my boobs though – oversupply was not a problem I had previously had. I also wasn’t afraid of milk.
In the days that followed I expressed small amounts and had the support of a BfN mothers supporter and other midwives, who reminded me babies feed 12 times a day. Expressing once a day was not going to cause big problems. Expressing my milk felt good, I was and am so proud of my body. This was the right choice for me.
Sadly I was unable to donate to the milk bank due to my medication but I know some other mothers who have successfully donated following baby loss and found great comfort in this.
There are lots of firsts I have missed out on with my baby, but the precious memories will stay with me forever. Breastfeeding creates a bond between mother and child and by producing milk I was able to fulfil part of my mothering need.
Smita Hanciles writes of the need for more cohesive support encompassing breastfeeding and perinatal mental health services. For more on this subject, come along to the BfN virtual conference on 2nd October, where Smita will be giving a presentation. Click here for full details and tickets.
Up to 20% of new and expectant mothers experience a perinatal mental health (PMH) problem. Depression and anxiety disorders are the most common, affecting 15% of women. However, these figures pre-date the pandemic during which women and their families faced extra pressures on their mental health, including anxiety about giving birth during lockdown.
In January 2016, the Five Year Forward View for Mental Health outlined plans that led to an expansion of specialist community PMH services to work with women experiencing moderate to severe illness. In February 2019, the NHS Long term plan built on this commitment with the aim of ensuring that women in all parts of the UK have access to specialist community services and inpatient mother and baby units and extending service provision up to 24 months after birth. It is hoped that by 2023/24, at least 66,000 women with moderate to severe PMH difficulties can access care and support in the community. This will account for around 10% of women giving birth. However, some women experiencing difficulties may not disclose symptoms, others may not reach the threshold for referral to these services and even those that are referred may need continued support when they are discharged. Peer Supporters could provide crucial support to these women especially when integrated within universal services.
All women will be feeding their babies regardless of their mental health status and will have feeding assessments carried out by maternity and health visiting services and some will access peer support services for help with breastfeeding challenges or social and emotional support. What role do these services play in supporting the mental health and emotional wellbeing of mothers? A recent evaluation of the Camden Peer Support service showed that parents reported improvements in emotional wellbeing when receiving breastfeeding peer support even when this was only available via online groups and video calls. Peer support reduces social isolation which is a risk factor for mental ill-health and it also provides listening support and a safe space where women may disclose symptoms or talk through difficult birth experiences.
If feeding difficulties are playing a part (as is often the case) in how a mother is feeling, then resolving these issues may also be helping to prevent escalation of symptoms of anxiety and depression in new parents. But the often-complex interrelationship between infant feeding and perinatal mental health is frequently overlooked as services supporting each have developed quite separately from one another. There can be a perception in PMH services that breastfeeding will add unnecessary pressure and hinder recovery from perinatal ill-health, or staff may want to help protect breastfeeding when it is important for the mother to do so but lack the training and skills to enable this. Multi-disciplinary teams within PMH services now include 8 new roles including Perinatal Peer Support workers with lived experience of perinatal ill-health but there are no specialist or peer support roles that focus on Infant Feeding.
Perinatal Peer Support workers are also being recruited as part of Maternal Mental Health Services that are being set up to integrate maternity, reproductive health and psychological therapy for women experiencing mental health difficulties directly arising from or relating to the maternity experience. Support will be provided for PTSD following birth trauma, baby loss or fear of childbirth and pilot schemes are underway to build the evidence base and identify replicable models. Could this be an opportunity to pilot the impact of including access to specialist infant feeding and breastfeeding peer support within these services? Increasing numbers of women are living with the painful emotions that come with trying very hard to breastfeed but failing, usually due to lack of timely and consistent support. Any attempt to promote breastfeeding where so many have been failed by an inadequate system is like trying to cross a field littered with mines. Information will be perceived as judgement or pressure and any celebration of breastfeeding could re-trigger painful and traumatic memories. As there is a move towards implementing a more trauma-informed approach to care in the perinatal period, it is necessary to recognise that healthcare teams and peer support workers can potentially exacerbate their own birth and breastfeeding trauma histories when supporting families which can create unconscious bias. How do we build supportive structures for individuals providing care to those experiencing distress related to breastfeeding difficulties and perinatal mental ill-health? How do we diffuse the emotional land mines to make way for meaningful discussions about the need for investment in Infant feeding support and training across all services that women access in the perinatal period?
One of the founding members of BfN, Dr Wendy Jones MBE has been supporting breastfeeding families for more than twenty years. As she heads towards her retirement, she reflects here on her time with BfN, and will give a presentation at our virtual conference next month.
Twenty-three years of providing information and support on the compatibility of medication in mother’s milk has brought about many changes, not least in expert sources available. This past year has brought many challenges for women, particularly when not able to see medical professionals face to face. So often mothers forgot to mention that they were breastfeeding, and doctors forgot to ask when prescribing over the phone.
The Drugs in Breastmilk information service was able to fill in those gaps on so many occasions. There was also a difference in the questions mentioning anxiety and depression (already one of the most common questions) increasing further. COVID and isolation affected us all. Not having the simple meetings where breastfeeding issues are normalised were missed opportunities for mutual support. I know because my daughter had a lockdown baby and as clinically vulnerable myself I wasn’t able to be there to support. FaceTime isn’t quite the same although still invaluable.
But over the past few months I have been joined by a new team of wonderful pharmacists (all registered breastfeeding Helpers) who can share the responsibility of the high volume of social media contacts. I’m looking forward to continuing to develop resources on my own website (www.breastfeeding-and-medication.co.uk) and Facebook page, whilst supporting the dream team on WhatsApp when needed. I’m also going to enjoy more time with my family – two and four legged.
No two days answering questions on the safety of drugs in breastmilk are the same, but everyone matters because behind it is a mum trying to keep her baby safe.
Zainab Yate explains the often complicated phenomenon of nursing aversion. To hear more, come along to BfN’s annual conference on Saturday 2nd October, where Zainab will be giving a talk entitled, “Help! Breastfeeding Makes Me Feel Sad, Mad and Bad.” Tickets for this virtual event are available here.
Many mothers and those who support them do not know that they can experience negative emotions associated with breastfeeding. In modern society breastfeeding is often used – problematically – to exemplify myths about motherhood and maternal love, and is bound up with ideas of what makes a ‘good mother’.In this context nursing aversion and agitation – intense, distressing feelings that are experienced by the mother during breastfeeding – can be both unexpected and hugely upsetting, particularly when women may have already overcome significant challenges in order to breastfeed.In a new book on the subject, When Breastfeeding Sucks, Zainab Yate examines what we know about this poorly understood aspect of infant feeding. Here she sets out the 10 most common misconceptions…
1. Breastfeeding mothers who experience aversion do not always want to stop breastfeeding!
Breastfeeding or Nursing Aversion (aversion) is when breastfeeding appears to trigger particular negative emotions like anger and agitation, skin-crawling sensations and an overwhelming urge to de-latch. You can also feel like a prisoner when breastfeeding or have thoughts of pushing your nursling off you and running away. Although it creates an emotional burden for mothers, and a strain on their breastfeeding relationship, mothers do not often want to ‘just stop breastfeeding’. What most of them desperately want is for aversion to go away.
2. Aversion can strike at any point in any breastfeeding mothers journey.
Whilst many in the infant feeding and mothering world knew that aversion can strike when a mother is breastfeeding while pregnant or when she is feeding an older nursling, it can actually happen at any point in a breastfeeding journey – with some mothers experiencing it at the newborn stage. Even though there is a strong argument that aversion is a natural biological trigger to start the weaning process in older nurslings, if you experience aversion and your nursling is under 12 months old, milk is their main source of nutrition so it is best to seek advice from an infant feeding specialist.
3. One reason for aversion could be oxytocin!
In some mothers, it is possible that they have a negative association to breastfeeding, whether it is due to being a survivor of previous sexual abuse, childhood trauma or simply because the start of their breastfeeding journey was very painful or challenging for many weeks, even months. I argue that these can cause a stress response due to the oxytocin, instead of loving, calming feeling it is well known for when breastfeeding. This is because oxytocin actually plays a role in stress regulation, and can cause fear and stress in negative experiences as it activates a part of the brain that intensifies the memory.
4. Some mothers self-harm in order to continue to breastfeed through aversion if they find breastfeeding painful.
This is known as the gate control method, a scientific theory that asserts the activation of nerves which do not transmit pain signals can stop or interfere with signals from pain fibres. So digging your nails into your thighs or biting down on your hand can inhibit the perception and therefore the sensation of pain in your nipple when breastfeeding. Many mothers in this predicament seem to instinctively do this. This would be a particularly severe level of aversion, as aversion can be experienced on a spectrum. If you feel like this, please seek advice from a health care professional or infant feeding specialist.
5. Aversion is different from Dysphoric Milk Ejection Reflex (D-MER)
D-MER is a medical condition that can be diagnosed in a breastfeeding mother when her letdown causes her to feel negative emotions like despair, despondency and hopelessness. It lasts a few minutes and is dissimilar to aversion as the latter can last throughout a whole feed, whether it is 2 minutes or 2 hours – like the breastfeeding-to-sleep-marathon that can happen at night. Mothers can, however, experience both, and I believe if you struggle with D-MER you are more likely to experience aversion due to the added difficulty you experience when breastfeeding.
6. Misdiagnosis can occur with aversion.
Some mothers have sought help and advice from their doctors about their aversion when breastfeeding, but because some of the symptoms of negative emotions are similar to post-natal depression, and because they have just had a baby, health care professionals had wrongly assumed they must be post-natally depressed. If you are otherwise managing fine in day to day life and your emotions, and your difficulty with breastfeeding is just when your nursling is latched, or if anti-depressants the doctor prescribed you do not help your aversion, return back to your doctor and asked for proper screening, assessment and support.
7. Weaning and stopping breastfeeding can be just as hard as carrying on!
Breastfeeding cessation can be very difficult for mothers with aversion because of compounded guilt and shame that they experience in the aftermath of their negative emotions. Even if breastfeeding mothers who experience aversion do decide to wean, many can be surprised at how difficult it is to wean, both practically (if they have a particularly boob-attached nursling), and emotionally, as mothers have to process the feelings of guilt and shame around the negative emotions, and separate that with the guilt of stopping. Understanding that aversion is actually a reasonable response to an intolerable situation, what can alleviate or lessen aversion, and what the weaning process entails can help you get through it.
8. Mothers with aversion fear they are harming their nurslings
So many mothers I support are concerned about having aversion when breastfeeding – that it will harm their nurslings because of the nature of the emotions – but there is no evidence to show this happens. Whether it is feeling stressed or angry when breastfeeding, or even weaning earlier than you or your nursling want due to severe aversion, there is no evidence to indicate there is any long term harm caused to your nursling due to this. We all know the benefits of breastfeeding both mentally and physically as there is a lot of research about this, but we must understand these facts in the context of the research. These studies and statements are about when breastfeeding is going well. With severe aversion and breastfeeding challenges, it is questionable whether all the benefits of breastfeeding and bonding remain, and we know the research shows that when breastfeeding is hard or painful mothers are actually more at risk of post-natal depression.
9. Aversion can lessen or even go away for some mothers
For mothers who figure out their triggers, make lifestyle changes, improve their sleep hygiene, eating habits or use supplements like magnesium, aversion can abate and for some, it disappears as quickly as it reared its ugly head. There is always something you can try, and accessing our free online structured support course on www.breastfeedingaversion.com, or our peer-to-peer support group ‘Aversion Sucks’ on Facebook to get tips and tricks from other mothers struggling can instantly help you deal with aversion.
10. You don’t get aversion with every nursling.
Sometimes mothers worry that because they experienced aversion with their first nursling they will automatically get it again, but this isn’t always the case. As I outline my biopsychosocial theory of the phenomenon of aversion in my book ‘When Breastfeeding Sucks’, I cover why some physiological, psychological and societal causes can mean you experience aversion. I believe forewarned is forearmed, and the second or third time around as a breastfeeding mother you know more and are more empowered to protect yourself against things that can compromise your physical and mental health and therefore to protect you against aversion.
Zainab Yate BSc, MSc (Medical Ethics & Law, Imperial College London, UK) is a biomedical ethicist, clinical hypnotherapist, independent researcher and campaigner. Zainab is vice-chair and named qualitative lead of a London Research Ethics Committee, with the Health Research Authority (HRA) and has a background in public health and commissioning with the National Health Service (NHS). She published the first peer-reviewed study looking specifically at breastfeeding/nursing aversion and agitation in 2017 and has published the only book on the topic with specialist publishers Pinter & Martin, London. Zainab has been a breastfeeding peer supporter with the NHS for a number of years and is the owner of the only resource site for mothers and healthcare practitioners on aversion (www.breastfeedingaversion.com), she has helped tens of thousands of women and families when breastfeeding triggers negative emotions – both Dysphoric Milk Ejection Reflex and aversion, through her advocacy, free structured support course and peer-to-peer support groups.
Breastfeeding peer supporter Hannah was diagnosed with bowel cancer in 2020, and was repeatedly told during treatment that she would have to stop or avoid breastfeeding. Thanks to the BfN’s Drugs in Breastmilk factsheets (as well as her own determination and self-advocacy), she was in fact able to continue safely feeding both of her children throughout. Here’s her story.
I’m Hannah. I trained as a breastfeeding peer supporter with Home Start in Sheffield in 2017 (though this centre has sadly now closed). I breastfeed both of my children (aged 4 and 1). I had come to hear about the Breastfeeding Network early on in my parenting journey – I was on various breastfeeding support forums on Facebook, and BfN’s drugs factsheets were shared a lot whenever someone had a question about breastfeeding and medicines.
In late 2020, I was diagnosed with bowel cancer after waiting 5 months on a waiting list due to the pandemic. I always thought I had bowel cancer but doctors had convinced me it was IBD. I walked into the room for my colonoscopy and said “I think it’s cancer.” The doctor replied, “That’s very unlikely at your age.” But sure enough, within a few minutes of starting the procedure, the atmosphere in the room changed. I was in agony, I knew something was wrong. I was wheeled into recovery and left on my own. I glanced at the report lying out on the table next to me, where under the findings heading, it said Colorectal cancer, 40mm. My heart sank. It’s a horrible feeling to be right all along. It was devastating as my youngest child was only 7 months old, and I feared I would have to wean her.
After that, things moved quickly. Scans confirmed the good news that it was operable and contained in the bowel, and I met with the surgeon the following week. I had to make a difficult decision to remove 80% of my colon to prevent future cancers. I used the BfN fact sheets to check that it was safe to feed after my CT scan, since staff in the CT unit had no idea what was ok for breastfeeding. At my surgeon’s appointment he mentioned I’d have to stop breastfeeding for 24 hours after surgery – thanks to the detailed factsheet on anaesthesia, I knew it was safe to feed after general anaesthetic. So I proudly stood up and told him he was wrong.
When my letter came through for admission, the anaesthetist had also written a note to say I should stop breastfeeding after surgery. I was a bit disappointed that yet another member of staff had asserted incorrect information. I printed off all the factsheets on anaesthesia and pain relief and brought them with me, so I was fully armed to defend myself when I was admitted for surgery a few weeks later. I was very lucky that I didn’t need them, as a different anaesthetist greeted me that morning, and told me it was perfectly safe to breastfeed after surgery. He discussed options for pain relief and had designed postoperative pain relief that lessened the need for morphine in my blood stream. Despite covid restrictions and worsening case numbers, the hospital kindly allowed my then 8 month old baby and husband to stay in the hospital with me. I pumped a sippy cup of milk before I went to theatre and returned 7 hours later free of cancer. Baby survived on snacks but hopped straight back on the boob as soon as I returned. I was discharged 4 days later but I was back in hospital 6 days later.
This is where the factsheets really came to my rescue. I ended up in back in hospital with extreme stomach pain and high fever. The new join in my bowel had leaked gas into my abdomen and it had caused a huge infection. I needed antibiotics. When the doctor arrived with the antibiotics, I asked if they were safe for breastfeeding, and thankfully he answered honestly “I don’t know”. I said “let’s check then”, pulled out my phone and went to the factsheet on antibiotics. We scrolled the sheet together and identified both drugs and verified within seconds they were both safe. Thus I was able to start treatment quickly.
I was discharged after a week without need for further surgery and whilst in hospital received the good news that I was stage 2 bowel cancer and chemo would not be beneficial. Unfortunately I was separated from my baby for a lot of that time, due to a covid case on the ward, where I wasn’t allowed visitors for the last 3 days. Baby survived on artificial milk and food as well as expressed milk when I was well enough to pump. She never took a bottle, but drank from sippy cups and open cups, only taking around 30ml at a time. My supply was very low when I got home, but with the help of my milk loving 4 year old and the baby, my supply returned to normal after a week or so.
Things I learnt about breastfeeding and medical issues:
If a healthcare professional tells you that you can’t breastfeed due to a medicine or medical procedure, don’t just take it at face value.
Do your own research, and check facts from reputable sources such as the Breastfeeding Network.
Ask for details of exactly what medicines or substances are being used on your body, you have a right to know and to verify their safety for breastfeeding.
If something isn’t safe, ask what other options there are. There are always options in medicine, even if one is clearly the best one. You have a right to choose what happens to your body.
Doctors and healthcare professionals are experts in their field but they are not often trained in breastfeeding. Do listen to their advice on your treatment, they only want the best outcomes for you, and sometimes stopping breastfeeding for treatment is the right choice.
I am eternally grateful to the Breastfeeding Network and their factsheets. They have saved me from much worry and uncertainty around all of my treatment and surgery, enabling and empowering me to keep doing the thing that gives me the most joy in my life (breastfeeding) during an extremely traumatic time.
BfN peer supporter and Camden Baby Feeding Team member Zamzam Elmi talks about her experience breastfeeding 4 children through Ramadan, and the decision she made each time. She also explores how we can best support Muslim mums to breastfeed during Ramadan, whether they decide to fast or not.
Ramadan Karim! May we all have a fulfilling and blessed month.
Firstly, I would like to say that Allah is aware of what you can bear or manage and will not expect beyond that.
Deciding on whether to fast or not is a tough and spiritually challenging decision to make especially knowing how blessed/special the month is, but we are fortunate that we have been given concessions by his mercy.
Remember that breastfeeding is a form of worship if done with right intention, and taking advantage of the concession is God given right to protect us and our babies.
Listen to your body and keep an eye on your baby if you do decide to fast, speak to a health professional if you have any concerns or worries. Also take your prenatal vitamin as levels of nutrients such magnesium, potassium and zinc may be affected.
Every drop of breast milk is reward gained and you can still gain more spiritually by reading the Quran and doing your dhikr whilst breastfeeding or bottle feeding. This is a lovely time to bond with your baby as well as lifting you spiritually and emotionally.
With all my children I did different things depending on the situation.
My first child was premature and I was expressing, so during his first few week of life I fasted some days and not others.
With my second child, I could not fast at all as she feed frequently. I made up the fast later once she was weaned.
As for my 3rd child, also exclusively breast fed, I managed to fast the full month with good preparation and knowing how to take care of myself whilst fasting.
With my 4th, I also fasted most days, and I gave fidya [feeding the poor for each day missed].
Supporting Breastfeeding During Ramadan
As peer supporters, we have great duty in supporting mums to feel empowered to achieve their goals by giving information so their decisions are informed. Supporting mothers during Ramadan is no different to helping mums reduce factors that may have a negative impact on their breast feeding or supply.
Things to consider are:
If a mum is fasting during the summer months (this usually an 18hr fast with 5/6hrs window to eat) she will need to drink little and often and during the times she is allowed to eat and drink.
Mums will need to eat high nutrient dense food such as date, fruits and nuts to help replace the magnesium, zinc and potassium levels that may reduce during fasting.
Avoid drinking too many caffeinated drinks and replace with water, fresh fruits juice, herbal teas and green smoothies.
If a mum is fasting during the winter months which can fall between 10/12hrs of fasting, this is much easier as the sunset is much earlier and they have a longer period to eat and drinking during dawn. So really its like having a very late lunch.
If a mum is exclusively breastfeeding and has a baby of 0-6months, its highly not recommended she fast at all, this is because of the increased nutritional demand. As I have done on many occasions, mums can make up the fast later or feed someone poor as a compensation but to also feel the spirit of Ramadan.
Some of the questions mums may have during Ramadan will be around supply and how best to protect it. Also, just as a reminder feeding support will not differ as the same information will apply when it comes to protecting supply and breastfeeding. Success in having enough to feed the baby depends on staying well hydrated, reducing stress and keeping breastfeeding as close/normal to when they are not fasting. If a mum is mix feeding, it’s important to give the usual information on how bottle feeds can impact the breastfeeding, as well as the fact that she maybe more likely to increase the bottle feeds to help cope with demand. It’s important she has the facts so she is aware of the possible risks.
We must remember to keep giving mum a safe space where they feel they have permission to come and talk through their decisions without judgment or fear of being misunderstood. This will help you protect the well-being of both mum and baby. Another question might be how do I know if I or baby are dehydrated? When should I seek help? It’s important to make sure a mum feels safe to come for support if her decision to fast has had an adverse effect on their health.
Muslim mums know they may be able to fast if theirs or their baby’s health is not adversely affected during that period of fasting. It’s good to remember they are well experienced in fasting and they come from a place of having knowledge of what its like.
For peer supporters who are not Muslim or who may not know much about Ramadan, it is imperative to keep in mind that choice should always be at the forefront of any breastfeeding journey and the support we provide will very much be based on an individual case by case basis. It’s also okay to say I’m not sure and signpost/refer mums to other sources for more information.
As part of World Autism Awareness Week, BfN and National Breastfeeding Helpline Helper Katrona draws on her own experiences to share some information about breastfeeding when you are on the autistic spectrum.
The term autistic will be used here instead of a person with autism because many people with autism (including the author) see it as part of who they are and not just something they have and therefore is their preferred term.
Thanks to the media, when people think of autism, they often think of stereotypical autism – male, non-verbal, rocking back and forth or stimming (repetitive movement) or being a savant (having special skills, like Dustin Hoffman in the film Rain Man).
Autism is not an illness, it just means that your brain works in a different way from the general population. It can mean that you have difficulty with social interactions and communication – it is said that up to 93% of communication is through body language, so it can be hard when you are depending on the 7% verbal component to understand what people are meaning when they speak. Sensory issues – your senses are too high or dulled meaning you experience touch, sight, sound too intensely or have trouble recognising and feeling changes in them. Autistic people often like order and certainty in life, have black and white thinking and can find comfort when the world follows logical rules.
Like myself, many females who are diagnosed with autism are diagnosed at a later stage of life instead of childhood, usually after they have had their own children.
So what has this to do with breastfeeding?
Well first of all females can be autistic, have children and breastfeed. Due to diagnosis criteria and the fact that from an early age girls learn to mask (changing your behaviour to fit in to what society deem socially acceptable) instead of a diagnosis of autism they are misdiagnosed with anxiety or depression. This may mean any challenges faced when breastfeeding are not addressed
The challenges faced by autistic breastfeeding mothers vary and can include:
Feeling “touched out” and “touch overload” being misinterpreted as a feeding aversion.
Interpreting touch as pain or having less sensation of pain and not realising damage is being done to the nipples.
Phrases like “you are looking for three dirty nappies a day and five wet nappies” – does this mean if my baby is peeing ten times a day or pooping after every feed is it a problem? Vague terms like “some mums may find” and “heavy nappies” can be confusing and cause over worry and anxiety.
Trouble taking in large amounts of instructions at one time or focusing on breastfeeding and reading detailed studies and both cause confusion.
There is a lot of uncertainly with babies, they don’t do what the books say they will, they change their routines and when your life is easier if there is an order to it and predictability, dealing with a new born can be very overwhelming. The lack of sleep and uncertainty can disrupt coping methods and exasperate the effects that autism can have on your life.
These can all be negative when breastfeeding with autism but there are plenty of positives as well. Breastfeeding can cut down on anxiety and worry – there is no need to measure formula out, make sure bottles are properly sterilised. Can help with mother/baby bonding by bringing a sense of normality to the mother, being able to do what neurotypical mothers do, and not feeling so different. Cuts down on sensory overload – the easiest way to settle a crying baby is to stick it on your breast, stops crying instantly, no need to wait for a bottle to be prepared.
Most of the challenges can be overcome or lessened by good communication with health care providers and supporters, thinking about the individual problems and finding new strategies and coping methods to address them. Many autistic women can be very determined, some may say stubborn but they know how much they can deal with and put up with. Understanding this and remembering if goals need to change, like the introduction of formula top ups, can be really upsetting to autistic mums but having research which they can read and study further can really help.
Some simple things like checking communication is going both ways, and finding strategies for coping, no matter how unusual they are can make a big difference to an autistic person’s breastfeeding journey.
Breastfeeding a baby with Down syndrome can sometimes present challenges, but with the right information and support, many can breastfeed successfully. As part of World Down Syndrome Day, here we present two pieces from mothers of children with Down syndrome. First, Sarah gives her tips on successfully breastfeeding a baby with Down syndrome. Then Alice gives some pointers to those supporting families of children with Down syndrome.
Sarah is a BfN peer supporter and mother to Zephaniah. Here she gives her ten top tips for breastfeeding a baby with Down syndrome. You can read more of Sarah and Zephaniah’s story on Sarah’s blog, Chromosomes and Curls.
So you have decided you would like to breastfeed your baby. There are so many benefits in breastfeeding and these can apply even more so to babies with Down Syndrome. Breast milk can boost your babies immune system and provide protection against numerous auto-immune disorders such as celiac disease, allergies and asthma to name a few. The act of breastfeeding itself will strengthen your babies tongue, lips and face which helps with future speech development.
Sadly there is a myth that babies with Down Syndrome cannot breastfeed and I’ve heard many stories of mums not being supported or being told their baby won’t breastfeed so not to bother trying by various healthcare professionals.
Whilst it’s absolutely possible for many babies with Down Syndrome to breastfeed efficiently and successfully, there are some factors that may arise which can impact on establishing feeding. Medical complexities, low muscle tone and lack of suck, swallow, breathe co-ordination are some of the additional challenges facing babies with Down Syndrome. As a result some mums will breastfeed with expressed breastmilk from a bottle/tube and others will move onto formula milk.
I have been a breastfeeding helper with the BFN (the Breastfeeding Network) for around 5 years and Zephaniah, my baby with Down syndrome, is my second breastfed baby. I had a pre natal diagnosis and one of my major fears and concerns was whether I would be able to breastfeed. Thankfully I was surrounded by wonderfully supportive people who reassured me that it would be hopefully be possible! We had a slightly rocky start and I had to express almost exclusively for the first 3 weeks whilst bottle feeding and using an ng tube whilst we were in the special care unit and in the first week or so at home. Zephaniah is now four years old and breastfed until he was 2.5.
Here are my top tips! I would love for any other breastfeeding mums (or dads) to share any of their top tips in the comments.
1. Find your support during pregnancy This is so important when pregnant with any baby. It’s something I learnt in hindsight after I had my first baby. The immediate post partum period can leave a woman feeling vulnerable, emotional, hormonal, physically in pain and sometimes the thought of trying to seek out where you can get support from can feel overwhelming. During pregnancy pop along to your local breastfeeding support group or La Leche League meeting and have a chat. Ask what support is available in hospital in the immediate post natal period. Have the breastfeeding helpline numbers to hand.
2. Colostrum Harvesting Speak to your midwife about harvesting some colostrum in the last few weeks of pregnancy. This is expressing and collecting colostrum. They can show you a correct technique and provide you with syringes to collect the drops in. This will be beneficial in the early hours/days if your baby struggles to latch straight away or needs expressed milk/supplementation.
3. Donor Milk Policies Talk to your hospital about their policies and availability of donor milk/milk bank if this is something you would prefer your baby to have over formula should you be required to supplement your baby with milk. Hospitals have different guideline that they follow so if you have something in place with them it will make things easier when the time comes.
4. Be prepared to pump There are many reasons you may need to express breastmilk for your baby. It could be that your baby is struggling to latch or it could be due to a nicu/scbu stay, or baby being too sleepy to feed. If you baby has a heart condition or other medical issues going on then they might tire easily. Whilst you are in hospital you should be able to access a good hospital grade double pump. There are some companies that hire out hospital grade pumps at home or you can use a high street brand electric or manual pump. Some babies with Down Syndrome will breastfeed with no problems from the beginning, others, like any baby, may take longer to establish effective, successful feeding. Some mums will decide to pump exclusively for their babies for whatever timeframe they choose to. I pumped for around 3 weeks with Zephaniah before he was effectively feeding at the breast. I know a mum who pumped for 5 months before getting her son to feed directly at the breast.
5. Be wary of the phrase ‘It’s a Down Syndrome issue’ Don’t assume or allow anyone to dismiss problems you are facing as being ‘a Down Syndrome issue’. As a breastfeeding helper I have seen many women with typical babies facing all sorts of difficulties when establishing breastfeeding. Position and attachment, tongue tie, sleepy babies, being pushed into formula top ups, and mis information and awareness of typical newborn behaviour patterns are common reasons for struggling and all of these same things can apply to you and your baby with Down Syndrome as well as some additional challenges your babies may face. The main additional challenges your baby may face is difficulty latching and feeding due to low muscle tone, taking longer to establish a breathe, suck, swallow routine, being more sleepy or tiring easily. If your baby has complex medical issues such as a heart defect or anything else requiring surgery then there may be pressure for your baby to gain a certain amount of weight in a specific timeframe and sometimes this can make establishing breastfeeding a challenge.
6. Comfort and support Low muscle tone in a baby can often make the baby feel heavier or floppy and more of a challenge to hold whilst breastfeeding. It’s important for your comfort, and your baby’s, that you are both well supported with good position and attachment. A suitable chair, a supportive breastfeeding pillow or your own cushions can help with this. Babies with low muscle tone will often brace their feet against something such as the arm of the chair to stabilise themselves and this can lead to arching which can impact on the positioning of the feeding. You may also want to give additional support to the babies head whilst making sure you aren’t restricting their movement.
7. Dancer Hand Position. This is a technique that can assist when a baby has low muscle tone. You start by holding the breast in the C-hold (thumb on top and 4 fingers underneath) but support the breast with only 3 fingers leaving your index finger and thumb free to hold the baby’s cheek on either side, forming a U shape with the baby’s chin in the bottom of the U. This keeps the weight of the breast off the baby’s chin and helps keep the head steady. This can really help your baby to maintain a good latch. In the early days of feeding Zephaniah he really struggled to maintain a latch and without adequate chin support he would slip off the latch frequently. I would always have to feed him with a muslin cloth underneath as he leaked so much milk out of his mouth. As he got bigger and stronger so did his latch.
8. Skin to skin. Make lots of time for skin to skin contact with your baby. This will help establish your milk supply and raise oxytocin levels. Whether you have a prenatal or post natal diagnosis, the immediate time after birth can often be traumatic and confusing. Your baby may be in the nicu or scbu where it can sometimes be more of a challenge to easily have skin to skin with your baby so it will need to be intentional. You may be feeling a variety of emotions and some mums may struggle to initially bond with their baby after having a surprise diagnosis. It’s normal to go through a range of emotions from sadness,to grief, to guilt, to anger and everything else in between. It’s also normal to not feel any negative emotions and have no issues with bonding, everyone is different and all feelings are normal.
9. Weight chart and red book. In the UK all babies are issued with a red book at the hospital which contains medical information and growth charts/developmental information. Make sure you are given the green Down Syndrome insert which contains specific weight/growth charts as babies with Down syndrome can grow at a different/slower rate to typical children. Your baby may seem to be on a lower centile on the typical graph which can lead to some health care professionals recommending top ups of either expressed breast milk or formula when it’s unnecessary.
10. Go easy on yourself and enjoy your baby Having a baby is a major event in anyone’s life and having a baby with additional needs adds an entirely different dimension on to that. Do what is best for you and your baby. Make informed choices. If you want to breastfeed and are struggling, try and find the right support and be patient as it can take time to establish.
If you are a mum who desperately wanted to breastfeed and have been unable to, know that you did your absolute best for your baby and you are amazing for giving it a go!
Alice works for the Portsmouth Down Syndrome Association, and is mother to Teddy. Here she writes about their experience, and gives some information on how best to sensitively support the families of children with Down syndrome on their breastfeeding journey.
I feel it’s important to start by explaining that I am not an expert in breastfeeding! I am a Social Worker and had chosen to specialise my career in working with people with Learning Disabilities. It wasn’t until my second son, Teddy was born, and then diagnosed with Down syndrome that I realised just how important and powerful language and knowledge is for everyone involved in supporting a family. I reached out to my local support group Portsmouth Down Syndrome Association (PDSA) when Teddy was diagnosed, and they supported my family from his diagnosis and throughout our journey to the cheeky 4-year-old he is now. I started to volunteer with PDSA and now provide education and training for Health and Social Care practitioners on all aspects of Down syndrome. It is important that families of people with Down syndrome have access to the support that they need and that this is delivered holistically.
Teddy was born by an elective c-section due to being breech. We had a blissful hour of skin to skin and Teddy was great at feeding, he latched straight away and ‘just got it’. After 24 hours in hospital recovering, both Teddy and I were discharged home (his diagnosis was missed) and we were eager to start life as a family of four. Teddy was brilliant at feeding and on day 3, we were rewarded with the fantastic news that he had gained 40g! However, Teddy’s subsequent weight gains were ‘static’, and he only gained 20g a day. Due to extended jaundice at 2-weeks-old we were seen in hospital by a doctor and consultant who suggested some screening and tests. I was grateful as had some feelings that all was not as expected with Teddy. One of these tests diagnosed Teddy as having polycythaemia (a high concentration of red blood cells in your blood). We were admitted to hospital the next day for ‘failure to thrive’. There was a suggestion that Teddy may be having difficulties getting milk, and that he may not manage with a bottle so would need a Nasogastric tube (NG). I was clear with the team that I wanted to continue breastfeeding, and so would express the ‘bottle top ups’ that they felt Teddy needed. As I had fed Teddy’s older brother successfully, I was quite confident in my ability to provide milk for him. I didn’t know what a NG tube was – but they weren’t doing that to my baby if we could avoid it!! We started the gruelling 3-hour cycle of alarms, feeding, expressing, and topping up. One nursery nurse was incredibly supportive. She sat next to me on the bed late in the evening and told me to ‘stand by my guns, and that if I wanted to feed, that I could and should’.
Slowly but surely, Teddy continued to gain weight, and so we were discharged 4 days later. At 3 weeks old, Teddy’s genetic bloodwork came back, and he was diagnosed with Down syndrome.
A few days later at a baby weigh clinic, I asked for support from a breastfeeding volunteer, I wanted to see if there was anything more I could do to help Teddy. I remember the volunteer asking my husband and I ‘how she could help’. It was the first time, that I had to tell anybody outside of our family, and health professionals that Teddy had Down syndrome. I was so very aware of the other mothers feeding their babies close by and found it difficult to speak. The volunteer was lovely and tried to support me but referred to Teddy as a ‘Downs baby’. I didn’t know how to tell her that Teddy’s diagnosis was only part of him – it didn’t define him. He was (and is) so much more than his diagnosis.
At home, we continued to ‘top’ Teddy up with expressed bottles of milk, but Teddy gained weight rapidly and so we limited these. Teddy was able to switch effortlessly between breastfeeding and bottle feeding – he wasn’t particularly bothered where his milk came from – as long as he had milk!
Breastfeeding was especially important to me. It gave Teddy and I a ‘closeness’, it helped me feel that despite a world of unfamiliar health appointments, invaded by complex health professionals and new medical language that I was doing something ‘important and normal’. Breastfeeding helped remind me that first and foremost, Teddy just needed love and milk- like all babies.
My tips to anyone supporting a family of a child with Down syndrome:
See the child first. Use positive, person first language, Teddy has Down syndrome rather than Down syndrome baby/child.
Congratulate that family on their newborn, as you would any baby – all babies deserve a warm welcome!
Signpost a family to resources like Julia’s way and their local Down syndrome support group for more guidance.
Encourage a family to advocate for how they wish to feed their child.
Many mothers of children with Down syndrome who had early issues report that their baby was breastfeeding successfully by 3-4 months of age.
Be aware that health conditions, a child’s tone or coordination may impact on their feeding, but different feeding positions may support baby better. For babies which may tire easily, it may help if milk let down happens before the baby latches. Ensure liaison with SLT if there are any concerns regarding aspiration.
Ensure that the family have a PCHR insert in their red book and so the baby is being plotted on a graph for children with Down syndrome.
Although this Christmas is likely to be a little different, it’s still worth taking into account how you can maintain your feeding “routine” (even if it changes every day!) in among the celebrations. Mastitis is a potentially serious condition resulting from blocked ducts when milk isn’t effectively removed from the breast(s). Here, IBCLC Lucy Webber explains how changes in routine can affect your feeding rhythm – and makes some suggestions on how to avoid “Christmastitis.”
Did you know that rates of mastitis go up around holiday periods? Why? Well, loads of reasons to be honest. Let’s picture it shall we?
It’s your first christmas with your baby. You’re mega excited and so is everyone else to have this gorgeous bundle in their lives. Christmas is going to be AWESOME.
Lots of travelling around in the car visiting friends and family, making the most of maternity leave to see everyone and proudly show off this little person, taking up offers to go over and be cooked for! And that is genuinely fabulous.
But all that travelling leads to lots of time in the car seat, and for most babies the car seat sends them to sleep. And long sleeps mean long gaps between feeds, which leads to full breasts with potential for blockages…
Then the parties, the gatherings, celebrations! Lovely right?! Yes! Except everyone wants a hold of little baby Rupert and once again he has longer stretches between feeds. And when he does come back to you he’s over stimulated and over tired and only takes two minutes on the breast before he falls asleep leaving you with, you guessed it, full breasts….
Or the guests seem to think they know better than you do about baby Josie’s feeding cues and tell you she doesn’t need feeding, they can settle her for you. They talk about how ‘when they had babies you only fed every four hours and it didn’t do them any harm’. You’re then stuck between a rock and a hard place, because you would like to feed your baby, but you don’t want to upset family or the way they did things, and maybe they’re right?
Feeds are often cut short around celebrations, because you have lots of people offering to help and hold the baby so your dinner doesn’t go cold, or guests arrive, or you’re due somewhere, or you’re upstairs feeding and want to get back down to the party…the list goes on. So your breasts don’t get ’emptied’ like usual and can you guess what happens next? Yep….
Maybe you don’t feel comfortable feeding around Auntie Ethel and Uncle Bernard, so you don’t quite expose your breast as much as you might normally, and your clothes/bra are digging in a little and restricting milk flow and cause a blockage…
Maybe you’re sleeping somewhere different, the bed is different, you can’t quite get the angle of the feed right on this squishy mattress and the latch goes a bit dodgy, but you put up with it because you don’t want the baby to cry and wake everyone. Dodgy latch leads to breast not emptying efficiently…and you know the rest.
Christmas is lovely, but for a huge amount of people it’s also very stressful. Stress hormones can impact on oxytocin, which is the hormone needed to let your milk flow. So stress can temporarily inhibit milk flow leading to those full/blocked breasts again.
I might be coming across as a bit Bah, Humbug! but I’ve been around enough mothers with mastitis to know its REALLY not what you want to be dealing with at any point. It is not to be messed with, it is a serious condition and you can potentially end up very poorly.
What I’m saying is, take it EASY. Plan ahead now to make sure this holiday season is one where you can feed whenever and wherever you need to. Be led by your baby. Don’t stretch out or cut short feeds.
Listen to your body, not Auntie Denise.
You can find out more about mastitis, what to look out for and how to avoid it, in our factsheet here.
This post was originally published on Lucy Webber’s social media feeds and is reproduced here with her permission. You can find her on Facebook and Instagram.
Helen Ball has been researching the sleep of infants and their parents for 25 years. She conducts research in hospitals, the community, and her lab, and she contributes to national and international policy and practice guidelines on infant care. She is a Board Member of ISPID (the International Society for the Study and Prevention of Infant Deaths), Chair of the Scientific Committee for the Lullaby Trust, and Assessment Board member for Unicef UK Baby Friendly Initiative. In 2018 Durham University received the Queen’s Anniversary Prize for Further and Higher Education for Helen’s research and outreach work.
In her talk at this year’s BfN Conference, Helen will provide an overview of her latest project to develop and trial a support intervention for parents who may be struggling with infant-related sleep disruption or post-partum fatigue. Here is a brief abstract of the project to whet your appetite!
Disrupted parental sleep, presenting as post-partum fatigue and perceived as problematic infant sleep, is related to increased symptoms of depression and anxiety among new mothers and fathers. Previous research indicates that UK parents would value an approach that facilitates meeting their infants’ needs while supporting their own sleep-related well-being throughout their infant’s first year.
Six initial stakeholder meetings were held with 15 practitioners and 6 parents with an interest in supporting parent-infant sleep needs, to explore existing service provision and identify gaps. The Possums Sleep Program, developed and delivered in Brisbane, Australia in a GP clinic setting, was chosen as an appropriate approach.
Working collaboratively with a stakeholder group, we translated the Possums Sleep Program into an intervention that could be universally delivered in the UK via NHS antenatal and postnatal practitioners. Parent and practitioner views of the initial materials were obtained via feedback questionnaires and the tool was revised. The intervention was then field-tested by 164 practitioners who delivered it to at least 535 new parents and babies over 5 UK locations, to capture anonymous parent and practitioner views of the intervention concept, the materials, and their experiences with both.
The intervention helps parents recalibrate their expectations of infant sleep development, encourages responsive parenting and experimentation to meet their infant’s needs, offers parents strategies for supporting the development of their babies’ biological sleep regulators and promote their own well-being, and teaches parents to manage negative thinking and anxiety that can impede sleep using the principles of Acceptance and Commitment Therapy. The ‘Sleep, Baby & You’ discussion tool, a 14 page illustrated booklet for parents, was field-tested and evaluated by practitioners and parents who offered enthusiastic feedback.
Practitioners reported the ‘Sleep, Baby & You’ materials were easy for them to explain and for parents to understand, and were a good fit with the responsive parenting approaches they employed in other areas of their work. Parents who received the intervention postnatally understood the material and found the suggestions easy to follow. All parents who provided feedback had implemented one or more of the suggested changes, with the majority of changes (70%) being sustained for at least two weeks. Practitioners recommended development of digital and antenatal versions and offered feedback on circumstances that might challenge effective uptake of the intervention.
‘Sleep, Baby & You’ is a promising tool for promoting parental attitude and behaviour-change, that aims to adjust parental expectations and reduce negative thinking around infant sleep, promote responsive infant care in the face of infant-related sleep disruption and fatigue, and support parental well-being during the first year of parenthood. Initial field-testing provided insights useful for further development and subsequent testing via a randomised trial. Support exists for incorporating ‘Sleep, Baby & You’ into an anticipatory, universal intervention to support parents who may experience post-partum fatigue and infant sleep disruption.
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