BfN and National Breastfeeding Helpline supporter Katrona Templeton writes about the unique challenges faced by breastfeeding mothers with disabilities, and the ways that they may be supported to achieve their goals.
Can a mother with a thyroid problem feed?
Does having a colostomy bag affect feeding?
Does an autistic mother need different support and information than a non-autistic mother?
The answer to these questions is yes.
Hi, my name is Katrona, I am a 39 year old mother of two beautiful and very ‘lively’ daughters, aged 3 and 4. I have been a BfN helper for around three years and recently became a helpline supporter.
I am autistic and also have epilepsy and dyslexia. It was when I began to look for support and information about breastfeeding with these conditions that I realised that there seemed to be a gap in knowledge in this area. There is little information when it comes to supporting people with disabilities who wish to breastfeed.
Many mothers with disabilities and/or long term conditions face unique challenges when breastfeeding. For example:
Low milk supply and medication worries for thyroid problems.
The practicalities of feeding with a colostomy bag, does it need changing during a feed? Ensuring enough calories are consumed and absorbed by the mother for her baby and her own needs.
Dealing with a mother who may have read every article on breastfeeding known to mankind and can bring up obscure facts, but wants to feed even through the sensation of the baby latching and suckling makes her feel as if every inch of her skin is crawling with fire ants.
Disabilities, like mothers, come in many forms. Some difficulties are easily solved: sign posting to drugs in breast milk page; getting creative with positioning; discussing distraction techniques to bring the mother’s focus away from the feeding.
The biggest challenge faced is the resistance from health care professionals to support these mothers, with many seeing formula as the easiest option. This may be due to time constraints, a lack of general information about how conditions can affect breastfeeding, or concern that breastfeeding will put extra pressure on a mother who, in their eyes, already has enough to cope with, with their own health.
A lot of these mothers are more resilient that they seem at first glance, willing to put up with pain, reducing or temporarily stopping some medicines, constantly dislocating shoulders to name a few.
Breastfeeding can be a lot easier for these mothers than bottle feeding. It’s a lot easier to lift a baby, feed it and go back to sleep, than getting out of bed, into a wheelchair, to kitchen, make up the bottle, feed the baby, get out of wheelchair and back to bed.
For some mothers the mechanics of making up a bottle can be daunting, the ability to even screw on the lid can be a hurdle in itself. Reading the instructions on the tin can be hard or impossible for some, as not many formula tins have Braille on them. The anxiety of asking yourself questions like, “Have I put the right amount of formula to water in the bottle?”, “Is it too hot or too cold?”, “Has the baby had enough?”, “Is the bottle sterilised?” can be overwhelming for some mothers.
Breastfeeding can have extra advantages for some mothers and babies: staving off flares of Crohn’s disease; reducing the amount of time a baby cries helping with sensory disorders; helping the baby wean off the medication they were exposed to within the womb.
So what can be done to support these mothers and enable them to meet their breastfeeding aims? The most basic help is just listening to them, empathising with their problems, and talking through different ideas and methods to support them – from different positions, to ways of finding others with their condition who may have breastfed before and can give them tips and ideas.
Also helping them to face the reality that, in some cases, they may not be able to meet their breastfeeding goals, and may need to consider combi feeding or formula feeding. Supporting and guiding them through their decisions can be invaluable to the person concerned.
When mothers face these difficulties, breastfeeding will often give a sense of achievement for being able to do something that others thought was impossible. Empowerment from doing what they feel is right for themselves, their child and their family situation. A high percentage of these mothers will still breastfeed until the child naturally weans themselves, after fighting so hard in the first place to establish a breastfeeding relationship.
At the end of the day, mothers with disabilities or long term conditions are just like any other mother who is trying their best for their child. To be there for them, to listen to them and empathise with them is what they need. That and maybe some out of the box thinking.
Katrona runs a Facebook support group for breastfeeding mums with disabilities or long term conditions – click here if you’d like to check it out.
As part of caesarean awareness month in April, we’re sharing some information on breastfeeding after a caesarean section. Your caesarean may be planned or unplanned, but either way it needn’t derail your breastfeeding journey – the key is to be informed so you can be as prepared as possible.
First, BfN Supporter Zoë Chadderton shares some information on caesarean births, how they can affect breastfeeding, and steps you can take to help get feeding established – with links to a factsheet by BfN pharmacist Dr Wendy Jones. Then we’ll hear from Alyson, a BfN peer supporter, on her experience of breastfeeding after a C-section.
About caesareans & breastfeeding: Zoë Chadderton
There are three types of C-sections:
Planned (also called elective) – this is planned ahead of
time, and may be for a number of reasons, e.g. placenta praevia.
Emergency – this takes place during labour, normally because
of slow or no progress in labour or
baby/mum in distress. Despite the term “emergency”, the actual surgery is
performed in much the same way as a planned section, it just hasn’t been
planned ahead of time.
Crash – an actual emergency, mainly if the baby is in danger
and needs to be born very quickly.
Most sections happen under
local anaesthetic – an epidural or spinal block. General anaesthetics are rare,
but can occur.
Generally speaking, a caesarean birth can cause breastfeeding to be a little delayed compared to a vaginal birth because mum doesn’t get the natural surge of oxytocin that can help with her milk supply. However, that absolutely doesn’t mean that you can’t breastfeed after a C-section – just that you need to be aware of the issues that may arise, and how to deal with them to help get feeding successfully established.
Planned sections can be better in some respects because mum isn’t exhausted from the stresses and strains of labour, and she can plan what she would like to happen such as skin to skin in theatre, immediately after birth. Mums who are planning a section can also think about hand expressing colostrum before the birth (antenatal expressing), which may help if baby is delayed in going to the breast, and more importantly helps the mum be secure in her technique in a non-stressful situation (it can be quite stressful learning how to hand express because you HAVE to, because your baby isn’t feeding, rather than relaxed “I’m learning a useful skill” antenatal expressing). Even if you are not planning a caesarean birth, it can be a good idea to learn how to hand express before your baby is born – you can start after 37 weeks, and information on technique can be found here*.
Pain can be an issue – many mums worry about baby kicking their scar – and you may struggle to sit up for a while after surgery, so there are several feeding positions you can try to work around these issues. Lying down on your side with your baby beside you on the bed; underarm (also called rugby hold); and in some cases laid back feeding (also, confusingly, called upright hold or biological nurturing) can be really useful. Try out a few positions and see what works for you (see here for some tips). Check out BfN pharmacist Dr Wendy Jones’ factsheet for information on your pain relief options while breastfeeding – there are many options which are perfectly safe for you and your baby. Don’t be a hero – take that pain relief.
Get some skin to skin
contact with your baby as soon as you are able – preferably in theatre
immediately after birth. Mention it to the midwives, even in an emergency – it
can make a real difference to baby’s instinctive behaviour at the breast by
getting hormones flowing for both of you and
allowing both you and baby time to get to know each other and start your
feeding journey.
Finally, be patient. Take your time, baby might not
feed as quickly as you expect (this applies to all babies!), but skin to skin,
hand expressing and help from the ward staff or breastfeeding peer supporters will
all help. Good luck!
*(N.B. this video refers to small babies – however the technique remains the same for all babies, the only difference being that colostrum would more likely be collected in a syringe or cup rather than a spoon.)
~~~
Alyson & Charlie’s Story
I had always intended to
breastfeed my baby, and throughout my pregnancy was hoping for as natural a
birth as possible. I’d read about how breastfeeding often gets off to an easier
start after a natural labour, so I felt I would be giving myself and my baby
the best possible chance of success.
But apparently my baby hadn’t
read the birth plan. I found out at 36 weeks that he was breech, and to top it
off, his head measurement was (literally) off the charts…a trait he inherited
from both me and my husband. We were told there was a 50/50 chance that he
would turn head-down, but that if he didn’t and we tried for a breech birth,
there was a high chance that his big head would get stuck and we’d have to have
an emergency (or even a crash) C-section.
I was shattered by the news.
I felt like the natural birth I’d planned for was disappearing before my eyes,
and my chances of breastfeeding along with it. We decided to take a week, to
see if the baby turned, and to fully research breastfeeding after a C-section so
that we could be prepared. I was pleasantly surprised by what I found, and
realised that a C-section needn’t spell disaster for breastfeeding – I just
needed to be aware of what might happen and prepare for it. This was just as
well. Despite me doing various bizarre exercises to try to spin him around, the
baby remained resolutely breech, so we booked a C-section for 39 weeks…and
suddenly everything seemed very real indeed!
I visited my local
breastfeeding drop-in group before the birth, to speak to the peer supporters
there and get some information. They were amazing. They showed me some
positions (“laid back” feeding, and the rugby hold) that minimised the risk of
the baby kicking my incision, and that would mean I wouldn’t have to completely
sit up – since my core muscles would take a while to heal. They also explained
how I wouldn’t experience the same hormonal changes that I would have done in
labour, and how this might mean my milk was a little delayed in coming in. To
combat this, they advised lots of skin to skin contact with the baby, starting
immediately after birth and continuing throughout the first days and weeks.
They explained that this would help to get the oxytocin flowing, and also give
the baby a chance to follow his instincts and find his own way to the breast.
On the day of the birth, I
discussed our plan with my midwife and surgical team. They were very helpful,
and showed me how to put on my gown so it could be easily pulled down for skin
to skin. When Charlie was born (complete with frankly enormous head), he was
placed onto my chest almost straight away, and I held him like this, skin to
skin, for the first couple of hours. I was amazed to see him start “rooting”
for the nipple – it sounds unbelievable, but he did a sort of sideways
shuffle/crawl until he was lined up, then latched himself on and stayed there
for an hour. I had heard about this in my research and my visit to the
breastfeeding group, so I knew I should just leave him to it as long as I
wasn’t in pain, but it was still amazing to watch.
There was some concern from
the midwives that he slept for a long time after this first feed, so we spent
an hour trying to wake him up and persuade him to latch on, but he was
absolutely zonked out. One midwife suggested we give him some formula, but my
instinct (and everything I had read about getting breastfeeding established)
was to avoid this if at all possible. While I was not against formula per se, I
didn’t want to fill him up with it and therefore reduce the amount he needed
from me, which would impact on my supply and potentially delay my milk coming
in. Luckily another midwife suggested we express some colostrum into a syringe,
so that we could feed him that. She showed me how to hand express, and I was
delighted to see drops of thick, yellow colostrum coming out – the midwife told
me this was a great sign that things were happening as they should. I’ll never
forget her, she was so kind. I managed to express a couple of millilitres,
which we carefully dropped into Charlie’s mouth and he lapped up without even
waking up! About an hour later he woke up again and latched on for another feed
– we were observed by a midwife, who told us that the latch looked good, and
that she didn’t have any concerns about him feeding. This was very reassuring.
We were discharged from
hospital after 36 hours, and went home to begin our lives as a family of three.
Charlie spent the first night at home feeding A LOT. It was pretty constant
from about 9pm to 4am, not wanting to be put down, and only really being
content on the breast. If I hadn’t spoken to the peer supporters, I think I
would have really panicked that the C-section had messed things up, that I
didn’t have enough milk and that he was starving – but as it was, I’d been
warned that this may happen, that he was just “putting his order in”,
stimulating the breasts to kick-start my supply. I don’t know if this was more
pronounced because of the C-section – it may well have happened anyway. It was
pretty gruelling, but being prepared for it was key…I got comfy on the sofa
with a mountain of snacks, drinks and a whole lot of Netflix. I felt very lucky
to be facing this after a straightforward birth, rather than an exhausting
labour, so that was a definite positive of the C-section for me. I also sent my
husband off to get a bit of sleep, so he’d be refreshed and ready to tag in for
a while later! Obviously he doesn’t have boobs, so did a lot of cuddling,
bouncing and singing for an hour or so while I grabbed a quick nap. This really
helped. It’s an absolute myth that dads can’t help or bond with their breastfed
babies, there is so much that they can (and do) do.
My milk came in on day 3. I
felt like I transformed into a Pamela Anderson lookalike overnight, which was
both alarming and reassuring…this breastfeeding thing was really working!
Charlie continued feeding like a trooper, and over the next few weeks my supply
regulated and I felt more normal again. It was also really useful to use the
hand expression technique I’d been taught in hospital, when I needed to keep things
comfortable between feeds.
I found the “laid back”
position really helpful, semi-reclined on the sofa/bed with Charlie lying
diagonally across me. It felt very comfortable and seemed to give him the
chance to follow his instincts without too much interference from me. Over time
we adapted the position so I could feed him sitting more upright, with him
straddling my leg. I found, with a bit of practice, I could feed like this in
many situations – useful when we were ready to go out for a coffee! At night,
his side-sleeper cot was a lifesaver – because of my incision, I found it
really tricky to get in and out of bed in the first few days, so it was great
to be able to just slide him towards me and feed in the laid back position.
I was lucky that Charlie took to breastfeeding pretty easily, and never had any real issues with latch etc. After a normal weight loss in the first few days, he gained weight well, and continued to breastfeed for almost a year. My C-section did have an impact on breastfeeding, but since I knew in advance, I was able to prepare and combat it – through immediate skin to skin, understanding frequent feeding (aka normal newborn behaviour!), avoiding unnecessary top-ups, and overall being led by my baby and feeding on demand, to let nature take its course. I was so pleased that we were able to breastfeed successfully, despite not having the natural birth we’d planned. I struggled for a while with the feeling that I hadn’t given birth “properly”, that my body had somehow failed me (I’ve now worked through this and know that any means of safely getting a person out of yourself is the “proper” way to do it, and is the opposite of failure), and breastfeeding really helped me to feel that something was working out the way I intended.
My advice to anyone intending to breastfeed would be to find out as much as you can before your baby is born, including the possible implications of a C-section, whether you’re planning to have one or not. As I discovered, birth plans are just a plan, and they don’t always work out the way you expect. Most of all, don’t assume you’re doomed before you even start – do your research, find a local group, ask your midwife, call the National Breastfeeding Helpline. They will be able to give you support and information, even before the birth, and help get breastfeeding established. You’ve got this!
A new report is published today evaluating the impact of the Breastfeeding Network’s Drugs in Breastmilk Information Service. This service provides evidence based factsheets and one to one support about taking medications or having medical procedures while breastfeeding to over 10,000 parents and professionals each year.
The Drugs in Breastmilk information
service was set up more than 20 years ago by the Breastfeeding Network and has
been funded by the charity ever since. It was established in response to
reports of many breastfeeding women receiving inconsistent or inaccurate advice
from some health professionals when they were prescribed a medication or
procedure. This service enables them to access the latest evidence-based
information on risk, from an experienced pharmacist.
The
research, led by Professor Amy Brown in the Department of Public Health, Policy
and Social Sciences at Swansea University, will be presented at the All-Party
Parliamentary Group for Infant Feeding and Inequalities in Westminster today.
It explored the experiences of mothers, health professionals and mother
supporters who had used the service.
The
evaluation found that the majority of mothers who contacted the service were
enquiring about every day medications and procedures, such as antidepressants
or antihistamines, where there is an established evidence base that continuing
to breastfeed whilst taking these medications is not harmful. Yet women had
been told by their GP or pharmacist that they could not continue breastfeeding
whilst taking it. On contacting the service, mothers were given the information
that they could continue meaning that many had the confidence and reassurance
to continue breastfeeding for longer.
Professor
Amy Brown explained ‘The findings are a
concern as we do not know how many women did not contact the service and
stopped breastfeeding through incorrect advice from medical professionals. This
service is clearly plugging a gap in the knowledge of some GPs which should
urgently be tackled by considering how medical professionals are trained not
only in the risks of medications and breastfeeding but also in the value of
breastfeeding for many mothers. Mothers highly valued the information they were
given by the service as it enabled them to continue breastfeeding and take the
treatment they needed. But they also particularly valued the support and
reassurance given by the service around making any decision. Mothers described
how before contacting the service they often felt dismissed and that their
desire to breastfeed did not matter, but after contacting the service they felt
reassured and listened to for the first time, describing the service as ‘a
lifeline’.
Indeed,
the evaluation examined how mothers felt before and after contacting the
service, highlighting a highly significant improvement in maternal wellbeing,
Mothers reported they felt more informed, confident, reassured, supported and
listened to after contacting the service, even if they were given the advice
that they couldn’t breastfeed whilst taking a prescribed medication.
Dr
Gretel Finch, Research officer for the project noted ‘We expected to see that the service would be rated positively by those
who used it but were struck by just how significant the impact was for maternal
wellbeing. Even when mothers were told that they could not breastfeed and take
a medication they reported feeling listened to and cared for, rather than
simply being told they couldn’t breastfeed. Given what we know about the
devastating impact not being able to breastfeed can have for maternal mental
health, this service is playing a key role in helping alleviate that by
providing women with answers and support, rather than a simple ‘no’.
The
report found that for many mothers, if they had not received information from
the service, they would have made the decision not to take their prescribed
medication, rather than stop breastfeeding. GPs often assumed mothers would
stop, but in reality, they valued breastfeeding so strongly that they would put
their own health at risk in order to continue doing so.
Dr
Heather Trickey, Research Fellow at the University of Cardiff School of Social
Sciences explained ‘It is clear that
breastfeeding women who are given incorrect information when prescribed a
medication face a difficult choice. Many stated that they would decide to
continue breastfeeding over taking the medication, putting their own health at
risk when in fact there was usually evidence that it would not be harmful to
continue breastfeeding. This is a common theme for new mothers when it comes to
information about caring for their baby. Many are not given accurate
information by health professionals about the real risks to them and their baby
putting their physical and psychological wellbeing at risk. Women deserve the
level of accurate information and support this service brings.’
The
evaluation clearly shows the impact the service has and the gap that it is
filling. As a result of the report the Breastfeeding Network are calling on the
government to ensure that this gap is not left to a charity organisation to
fund.
Shereen
Fisher, Chief Executive of the Breastfeeding Network, who commissioned the
evaluation, said ‘Many of the mothers who
contacted the service stated that they were only able to continue to breastfeed
because of the support and information they received. The service is vital for
women yet we rely on funding from the charity, goodwill and fundraising appeals
to provide it. Given the impact of the service upon maternal and infant health
and wellbeing we are calling for the Government to reverse cuts to the Public
Health Grant and to provide funding to support the continued work and expansion
of the service’.
The BfN Drugs in Breastmilk Service can only continue with sufficient funding. To donate to help keep the Drugs in Breastmilk Information service running, text BFNDIBM to 70085 to donate £3. This costs £3 plus a standard rate message. Alternatively, you can opt to give any whole amount up to £20 by texting BFNDIBM 5 to donate £5, BFNDIBM 15 to give £15.
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