Tuesday, January 28, 2014

Triumphant Tuesday - Breastfeeding a Baby With Prader Willi Syndrome

You are about to read the story of a mother who got a shock when her baby was born with Prader Willi Syndrome. Routine ultrasounds had not detected this non-hereditary genetic condition which results from a problem with chromosome 15. The syndrome typically causes the child to suffer from low muscle tone with motor and cognitive developmental delays, short stature if not treated with growth hormone, and later, incomplete sexual development. Most children with PWS are floppy at birth with initial difficulties in feeding, but then in early childhood begin to show an insatiable appetite which can be life-threatening. Read on to discover why it IS possible to breastfeed a baby with PWS, albeit not without hardship.


“Our third child was very much wanted and planned. After two boys, people would often ask if we were ‘trying for a girl’. We always replied that we just wanted a healthy baby, and when routine scans and tests showed that he (yes, another boy!) was, to their knowledge, healthy, we were happy and looked forward to meeting him.

Warning signs

At 40+12 I hadn’t notice him move for a bit, so went to my local hospital. I wasn’t overly concerned: this had happened a couple of times previously. This time, despite it being late November, I left the house with no coat and flat shoes (which is testament that I expected to be back very shortly. I always wear heels!). This time however, the CTG was pathological and I was blue lighted to the big, city hospital.

Within an hour I was having a caesarean section. Even at this point, I made it clear that I wanted my baby passed straight to me for skin-to-skin and that I wanted delayed cord clamping. The hospital staff were supportive of this plan and assured me we could go home after 24 hours….

Very low Apgar rating


Unfortunately Gideon was extremely poorly when he was born. His Apgar was 1. His breathing was very shallow, his heart rate was slow and he was extremely floppy and unresponsive.  I felt terrified. He was whisked away with just enough time for the briefest of kisses on his forehead. I thought he was going to die without me being able to hold him. I planned what he would wear to be buried in.

At 20 minutes of age, Gideon was transferred to the Neonatal Intensive Care Unit. I didn’t get my undisturbed skin-to-skin, I managed a fleeting kiss to his forehead and I was left wondering if his first kiss would also be his last. The obstetrician who delivered him said that had Giodeon been born a few hours later he would have been a still birth - a terrifying thought which makes me thankful I listened to my instincts and went to hospital when I did.

Gideon was several hours old by the time I first saw him. The doctors thought his floppiness was due to a ‘bad birth’; lack of oxygen and a possible brain injury. They were treating this by placing him on a cooling mat, which meant I couldn’t hold him or even touch him as his temperature had to be maintained.  It was horrid knowing that I couldn't hold him, but I could understand it was for the best. He was being given sugar water via a line through his umbilical cord at this point.


Pumping frustrations

My husband Peter went home to our two older boys and the hospital found me a private room and a double pump. I started pumping and hand expression immediately.  I had never been any good at hand expressing, so I found this frustrating as well as tiring. Despite being pretty knowledgeable and experienced in breastfeeding (I was still breastfeeding the older boys), this was very new territory for me.

That first night I pumped every two hours through the night. Drops of colostrum which were getting stuck on the pump. It was disheartening and I was scared that if I didn’t start producing something then Gideon would be given formula. As none of my babies have had formula, I really didn’t want that for Gideon – he had enough to deal with as it was.  Providing him with milk was the one thing I could do, so it gave me something to concentrate on.

The next day a wonderful midwife sat with me and helped me express tiny amounts of colostrum. It really was a two woman job – one of us to express, the other to catch the liquid gold. I will be forever grateful for her practical support: on a busy ward she spent hours with me helping me do what I could for my baby.  I continued to use the pump every two hours.

Tests

By day three my milk had come in, but Gideon was not improving. The doctors started further extensive tests to try and find out what was happening – brain scans, MRIs, chest/lung x-rays, blood tests, genetic tests. Gideon was now being fed my milk via an NG tube: he was still extremely weak and still on the cooling mat so I was unable to feed from the breast, or even hold him.

Tandem feeding to boost supply


Peter was traipsing back and forth between home and hospital, trying to look after two small (and very confused) boys, run a house, support me and deal with the fact we had a very poorly third son in hospital.  I was expressing milk every two-three hours and encouraging my older two boys (aged 2 and 4 at that time) to feed as much as possible to stimulate my supply.

After four days, Gideon was taken off the cooling mat and moved from NICI to SCBU. I was becoming increasingly keen to try and feed him, but the doctors were less keen: they were concerned about his gag reflex and the danger of aspiration. I thought that if I could put him to the breast, then he’d know what to do and everything would be OK. It was frustrating.

After a week I was discharged from the hospital. Going home without a baby was very tough. Nights were the worst. He should have been sleeping in my arms in the family bed - but he wasn't. Obviously, my two older boys were a great distraction. They had been very upset by my sudden and prolonged disappearance. We’d been preparing them for a new brother, but were expecting a home water birth, not a very ill baby in hospital. I was still having to express every two-three hours and Zachary, the youngest, was still wanting to be fed lots. I had to make sure that I fed him after I expressed to ensure I got the ‘easy’ milk off first and help him stimulate my supply. Zachary soon learned to hate the pump though – both because it put me out of action so was less attention for him and because he had to wait his turn. I was advised to double pump but couldn’t do this during the day as the children often needed my other hand!

I was still recovering from my caesarean, but really had to ignore the recovery advice and just get on with a very busy life: recuperation was a luxury I didn’t have time for. Gideon was still in hospital so I was visiting him every day – via public transport as I wasn’t allowed to drive at this point. The SCBU was well equipped to deal with breastfeeding mothers: they had plenty of pumps available and I was able to express either in a private room or with screens next to Gideon’s cot. The staff were very supportive of breastfeeding and I often heard them explaining to mums how important human milk is for ill or premature babies.

Peter would accompany me when he could but pre-schoolers and SCBU don’t mix! We did try to find people to help look after the older two, but after such a turbulent time they wouldn’t be left with anyone else. This meant that Peter and I took it in turns to visit Zachary – me with my cool bag of milk and an eye on the clock for the next time I had to express.

Test results


One by one, the tests were coming back with nothing to show – ‘normal’ as far as they could tell. Then, when Gideon was ten days old, we got back some of the genetic tests – which showed a positive diagnosis for Prader Willi Syndrome. My first reaction was one of relief: I had heard of PWS, I knew what it was and I felt better knowing what we were facing.

Immediately I started researching breastfeeding a baby with PWS. In babies, PWS is characterised by extreme hypotonia (floppiness) and failure to thrive. Most PWS babies never breastfeed and many never manage bottle feeds, relying instead on NG tubes. I was determined that my baby would breastfeed and started research straight away.

At this point Gideon was still being fed by an NG tube. He slept almost all day and never showed any hunger cues. He was fed on a timetable, every three hours. I was still expressing milk every three hours, waking at night to try and ensure I established my supply.

Home at last – let the mayhem begin

After three weeks, and just in time for Christmas, Gideon came home. He was being fed via an NG tube and was on oxygen 24 hours a day. How lovely it was to have him at home, in my arms and in the family bed where he belonged.

In the New Year, Peter went back to work and I was at home with three small children, school runs and housework…. I look back now and wonder how I managed. I was expressing every three hours, day and night. I was also breastfeeding the older two. I had to make sure I expressed the easy-to-get milk before I let them feed at the breast. I really struggled to find any information on long term expressing, but did get wonderful support and information from a friend who expressed for over two years for her son.


Expressing in public

I felt very restricted by the schedule of expressing so often. I am happy to breastfeed anywhere, but you can’t really sit in John Lewis cafĂ© and express milk…. I have expressed milk in just about every car park and disabled loo in the North East of England though! We carried on as well as we could, oxygen and feeding tube notwithstanding. Having two older boys meant we had to just get on with life.



Latching on


I continued to try and put Gideon to the breast – he simply did not know what to do. He didn’t root, he didn’t latch. He would occasionally chomp down, but that was it. I found the experience frustrating and soul destroying. It was also very hard to find the time to keep trying whilst also looking after two other young children. Gideon’s hypotonia meant I had to be extremely careful with positioning as I had to make sure his airway was not compromised. All the tubes just made it harder still.

Bottle feeding

By 8 weeks, I’d met another mum with a daughter with PWS who helped teach me how to bottle feed Gideon. This meant his NG tube was removed. He took an awfully long time to take each bottle – up to an hour and would often fall asleep. He didn’t have the energy or stamina to eat any faster.

So I continued to express. I worried about everything – would my supply keep up, would I meet the needs of three breastfeeding children, would I ever breastfeed Gideon ‘properly’? I continued to have excellent support from friends, from LLL and from medical professionals. I spoke to PWS professionals across the world looking for an ‘answer’ – the magic technique that would enable Gideon to feed at the breast.

Eventually I did achieve a couple of occasions where Gideon managed a couple of mouthfuls of milk from the breast. But that’s as good as it got. Gideon just doesn’t have the strength to breastfeed effectively, nor does he have the correct suck/swallow/breathe coordination. When he was very young, any attempt to breastfeed compromised his airway, so he stopped trying.


Donor milk


I am now expressing milk four times a day and just about keeping up with the help of domperidone and donor milk. Giving donor milk was not an easy decision: my knee jerk reaction is that of course I’d rather have human milk than formula, but there are so many things to consider when accepting it, from the safety (does the donor smoke, drink, take drugs or medications) to the ethics (can I be sure the donor isn’t detrimentally affecting her own supply at the cost of her children’s wellbeing), but my informed decision was that I was happy to accept it.

That said, the first time I gave him donor milk I found it incredibly upsetting. I felt I had failed him in some way by not being able to produce enough myself. I’ve always had an abundant supply of breast milk – but I’ve never been much good at expressing!

Bottle feeding Gideon - even with expressed breast milk - has been a very different experience to breastfeeding my other two sons. I would rather have fed Gideon ‘from the source’ – giving Gideon ALL the benefits of breastfeeding that he misses by getting milk from a bottle, but I remind myself that every single drop of human milk he receives is giving him an advantage. I’m also very aware that quite simply, if it weren’t for modern medicine, he wouldn’t have survived birth and without tube feeding he would have starved.

Writing this, and looking back over the past 13 months, is bittersweet. Trying to pump enough whilst juggling the needs of three young children meant lots of guilt feelings for me – some of which remain! I felt I was not doing anything properly. I suspect most mothers of three feel like that at times, but I still feel terrible that my big boys have suffered, and I feel terrible that they will grow up having to be Gideon's carers.

I’m not sure when it sunk in that I would never feed Gideon at the breast. It was a slow dawning rather than a sudden realisation. It makes me very sad: I wonder if I’d persevered, or given more time, or spoken to more people…would we have managed?  Logically, I suspect the answer is that no, nothing I could have done would have helped him feed at the breast. There is no magic answer. Instead I try and focus on my successes: Gideon was exclusively breastfed for six month; he has never had formula, and at 13 months I am still giving him breast milk. Alongside that I am still breastfeeding his two older brothers who are now five and three. I am hoping to get to two years of expressing for Gideon, despite being back at work now.”


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Monday, January 27, 2014

Is Breast Best by Joan Wolf - Book Review

Despite what her name may imply, Joan Wolf is not a children’s literary character. Disappointedly, she is an academic of Gender Studies at Texas A&M University. Her past works include ‘Harnessing the Holocaust: The Politics of Memory in France’ and ‘Conscience at War: The Israeli Soldier as Moral Critic’, which makes her perfectly suited to critiquing breastfeeding, no?

At least her identity as wannabe historian is transparent. A lot of the ‘evidence’ in this monographic rant is courtesy circa 1930. Come on, even the title of this book is lazy and out of date. No one is asking that question anymore Wolf, get with the program! Is Breast Best? No! Breast is normal. Alternatives to the breast are deviations from the norm. Look at it this way, ‘Breast is Best’ is like saying drinking a glass of water through your mouth is best, over funnelling it into your belly button. A normal physiological act cannot be ‘best’ - it’s just freekin’ normal. Jeeez.

I flick the face of anyone that claims this book is unbiased. Its fatal flaw lies in the unfortunate fact that its entire foundation is built upon two faulty assumptions: 1. That there exists a “Total Motherhood” zeitgeist; and 2. That Western culture is pedantically risk-adverse. I’ll roll up my sleeves and tackle each in turn:

1. The Total Motherhood Strawman

Wolf builds a house of straw only so that she can huff and puff and blow it all down, (sorry I couldn’t resist).

She begins her lament by asserting that:

 “The significance of breastfeeding in America has its roots in long-held assumptions about femininity and masculinity”

Emm, what assumptions would that be? That women lactate and men generally don’t? That’s not an assumption, that’s fact. Quick! Someone call the sexism police! God’s being unethical!

Alas, we can’t blame Wolf for crying feminism. The trouble with a woman’s studies academic writing a book about breastfeeding is that her frame of reference is not necessarily a good match for the subject matter. Wolf paints the whole topic with a sociological brush, when by its very nature, breastfeeding is, of course, physiological. The fact that women lactate is not a patriarchal conspiracy. Yet Wolf describes the advent of (man-made) formula as a feminist triumph, welcoming it with open arms and wet panties, and describing it as:

“Evidence of our conquest of nature and mastery over our body”.

Formula is central to women's liberation because apparently, our mammary glands are not just organs which produce milk to feed offspring, they are tools of the Patriarchy, designed to warp our minds and turn us into neurotic perfectionists. Breastfeeding is allegedly at the core of what Wolf calls “Intensive Mothering”, “The New Momism” and “Total Motherhood”. These rhetorical devices are designed to emphasise the pressure placed on mothers (but not fathers! The conspiracy!) to be “experts at everything”. This makes sense in a book about breastfeeding - dads have been dealt a duff card by Mother Nature on that front – however, Wolf asserts that Total Motherhood applies to all aspects of parenting: care, education, health, safety, behaviour, et al. Not only is this hyperbolic fiction, it is deeply offensive and dismissive of fatherhood. It smacks of the “don’t breastfeed because dad won’t be able to bond” fable, or more precisely, “don't breastfeed because it lets lazy-ass dad off the hook”. Dads might not be able to lactate, but they can do pretty much 99% of the other stuff. Parenthood is a joint venture and the bulk of current evidence reveals that men are stepping up. In reality, the closest we ever came to Total Motherhood was in the 1920s when childrearing was regarded as the unique domain of women. Nowadays, Total Motherhood has long been replaced with Total Parenthood. Wolf is 90 years too late in her theory, which is kinda embarrassing for a sociology professor and wannabe historian.

Next, we can see deeper evidence of Wolf's flawed reasoning when we look at the core of her Total Motherhood facade. This, we are told, is an anal preoccupation with risk:

2. Our Supposed ‘Risk-Adverse’ Culture


For her second strawman, Wolf bases her analysis on American society and speaks of a “risk culture” which:

“drives many people to build their life around reducing all conceivable risks. What they eat, how they raise their children, and which cars they drive”.

Apparently:

“Efforts to control the future, and specifically to prevent negative events from taking place, serve as an organizing principle”.

However, OCD-sufferers aside, the bulk of us don’t act this way. In fact, America and their Western cousin Britain are considerably accepting of risk. Renowned social psychologist Geert Hofstede (I’ve written about this dude previously) studied this phenomenon for several decades and found that the USA and UK were “uncertainty accepting”, “comfortable in ambiguous situations” and  willing to take risk. Turns out, our countries have “a larger degree of acceptance for new ideas, innovative products and a willingness to try something new or different, whether it pertains to technology, business practices, or foodstuffs” (Hofstede 2014). This is the polar opposite of what Wolf is basing her entire book upon.

She further stuffs her strawman by denouncing breastfeeding studies, drawing a phony distinction between “what children need (formula) and what might enhance their physical, intellectual, and emotional development (breastfeeding). Yet breastfeeding doesn’t ‘enhance’ anything. It’s merely the biological benchmark for normal physiological functioning. Again, the way this debate is framed by Wolf is remarkably off-course. It views breastfeeding as an optional extra - and one which is not worth the effort.

In a nutshell, this book is Wolf’s attempt to use her idiosyncratic faux concepts to frame women's infant feeding choices, the very thing she disparages others for doing. At a pinch, I award it one star for effort.

Tuesday, January 21, 2014

Triumphant Tuesday: Breastfeeding Despite Medical Negligence

If a health professional administered a drug to your child that later left them with chronic health problems, they would be guilty of medical negligence. They may very well lose their job over it, and rightly so. However, this degree of justice is routinely denied to the most vulnerable of patients. Indeed, there is a loophole in patient protection, whereby health professionals can administer medication without consent and against the patient’s best interests. Yup, I’m talking about formula.

This is the heartbreaking story of baby Hermione who, when born prematurely, was given formula against her mother’s express wishes. She later went on to become very ill indeed.


“In March 2012 I gave birth to my daughter, Hermione, four weeks early and weighing 4lb and 8oz.  I had planned a home birth and to breastfeed immediately but as my waters broke at 36 weeks I was induced in hospital. It was a fast labour and I was very sleepy and nauseous throughout.

Separation


As Hermione was early and very small she was swiftly moved up to Transitional Care Ward.  I trusted that the healthcare professionals would support me to establish breastfeeding, naively believing everything I was told and didn’t have the evidence to back up any misgivings at the time.

I was taken up to the ward and saw her in an incubator in the nursery with a feeding tube and antibiotic cannula. I was then taken to my bed, where I stayed. After a brief sleep I awoke feeling utterly bereft and asked to see Hermione. She was wheeled through in her incubator.

Formula given without consent

At some point Hermione had already been given formula although I had not been consulted! I had made it clear I wanted to breastfeed on my birth plan and in my maternity notes. I felt completely violated! Yet, I wasn't aware of my consent being required so felt powerless to complain. No one approached me to suggest initiating breastfeeding, I had to ask. I felt Hermione had been left too long without me; it was seven hours since I had given birth.

I then breastfed Hermione at around 5pm and she fed well. She breastfed regularly, especially on day two when she was then feeding every hour or so and no longer needed the incubator as her temperature had stabilised.  I was tired but happy with her regular feeding as I knew she was stimulating my milk supply. All I needed was reassurance at this stage, yet I was told by hospital staff on several occasions that Hermione didn't have a good latch. Yet I didn’t have sore nipples nor did I ever have to use lanolin. Hermione knew what she was doing even if everyone else didn't.

Formula pushing

However, in the evening of day two, a nurse suggested I give her a top up of formula, why? Because Hermione was feeding so much.  I was also told to limit her feeds to 20 mins and then give formula as apparently she “wasn't getting any milk after then” and was using more energy than gaining. I was very annoyed and confused as I didn’t understand why she needed anything but my breast milk.  I strongly rejected this and carried on breastfeeding on Hermione’s cue throughout the night. However the seed had been planted, ‘I didn’t have enough milk as my baby was feeding too much’.

That night Hermione fed for 4 hours without a break and a midwife, instead of supporting me, stated “this is what you have to do if you do not want baby to have a top up of formula.”

Did she have jaundice?


On day three I woke up engorged and was so relieved that my mature milk had arrived.  Hermione was still breastfeeding well throughout the day, although my mum said that evening she looked jaundiced. Whilst being weighed I mentioned this to the nurse but was told Hermione didn’t have jaundice.

On day four Hermione was very sleepy while breastfeeding and at some point it was confirmed that she did indeed have jaundice.  Due to the high level of bilirubin she needed phototherapy treatment and some of this time was spent away from me in the nursery. Obviously, this led to her breastfeeding less than she should.

Discouraged from public breastfeeding

On one occasion in the hospital nursery, Hermione became distressed after having her blood taken, so I started to breastfeed her. I remember looking out of the window at the sunshine. I felt elated and incredibly proud, good old oxytocin! Then a nurse said I should go to bed and feed Hermione in private, and I felt terrible, like I was committing a crime. If I'd needed privacy I wouldn't have fed her there in the first place. I said I was ok feeding Hermione there and continued but then felt uncomfortable and never fed her away from my bed again throughout my stay in hospital. Looking back, I feel there's the view that breastfeeding women make formula feeders feel guilty so they don't want us to be seen. Out of sight, out of mind.

Hermione recovered from jaundice and although she lost almost 10% of her birth weight, she did regain some weight.  I recall comments that she was still feeding for too long and don’t know if this unconscientiously made me curtail her feeds but it certainly didn’t give me any confidence.

By this point, Hermione was still somewhat sleepy and had difficulty staying awake whilst breastfeeding.  Jaundice prevents babies feeding properly due to the tiredness. I was given a hand expression kit. It contained a small dish to express into, a cup to feed baby and an instruction leaflet. However I wasn’t told why I needed to express, so being naive, I didn’t.  On day five I left hospital and was discharged under the care of outreach.

Fretful baby

Day six and seven were horrendous; Hermione was very unsettled, never seemed satisfied after breastfeeding and wouldn’t sleep except on me.  On hindsight she was just having a growth spurt, but no one had explained this to me so I was left doubting my milk supply, again.

More formula without consent

On day seven her blood was taken and, as her jaundice had returned, we were readmitted into Transitional Care Ward. During this stay, Hermione received more phototherapy treatment and overcame the jaundice within a couple of days. I asked to be woken when she needed breastfeeding.  On at least one occasion I was not woken and Hermione was given a full 2oz formula feed.  It was the same nurse who had previously encouraged me to top up with formula at the end of day two.  At no point was I ever told the importance of night feeds to stimulate early milk supply or the importance of breast milk to combat jaundice (it contains a specific protein that reduces bilirubin levels).

Using the breast pump as a supply gauge

One morning a nurse suggested that I use an electric breast pump after I’d breastfed Hermione.  I only managed to express 5ml and was totally devastated when she informed me that I didn’t have enough milk to feed my baby.  Again, this was wrong information as a baby is much more efficient in removing milk from the breast; therefore expressed milk volume does not necessarily represent supply. Expressing milk via a pump is a skill that has to be learned and some women can never trigger their let-down via a pump but can breastfeed their baby successfully.  Furthermore, Hermione had just breastfed which would have reduced any available milk anyway!

Suicidal

After this incorrect revelation about my low milk levels I became very depressed and suicidal; all I wanted to do was to breastfeed my baby and to be supported. I now felt I had no purpose in life as I couldn't breastfeed Hermione - utter devastation. It had never occurred to me that I wouldn't be able to successfully breastfeed and it literally felt like part of me had died. This was a very real symptom due to the affect of the milk factory starting to shut down as the night top ups had reduced my supply. The feelings were very frightening as I had no control on the level of care I received despite begging for help to breastfeed. A mental health doctor diagnosed PND. I was put on domperidone medication to help increase my milk supply.

I remember asking a nurse for a breastfeeding specialist and was quite rudely informed that all staff on the ward had breastfeeding training.  I had no idea of the existence of lactation consultants or any good websites for help.  I do remember a very supportive nurse who advised me to express after every feed to increase my supply.  She also suggested different breastfeeding positions and was generally encouraging.  Unfortunately she wasn’t always on shift and I was at the mercy of other nurses most of the time.

More formula pushing


By day five I had been told I had to top up Hermione with a certain brand of formula after every feed as “she was starving”. This felt totally alien as I’d never even considered formula feeding.  I was told “babies are fine on formula”. Even though I did not agree, I felt powerless to object. By this stage I was totally consumed with guilt that I’d failed my baby, that Hermione was starving because of my alleged inadequacies whilst also instinctively knowing that formula was wrong for her.

After most formula feeds Hermione was sick. Often full-feeds. A nurse said it was just normal positing but I now know it was more than that. It really upset me when she vomited as I knew she was also bringing up some of my milk too. She'd always want feeding again within the next hour. Yet, I was never given impartial information about potential health risks of formula feeding, and was pressured into giving it as opposed to someone helping me to establish breastfeeding.

I was also told personal stories by the hospital staff they couldn’t breastfeed as their baby wouldn’t latch on. Why they told me this, I have no idea. It wasn’t relevant to my situation as Hermione’s latch was always fine, she was just sleepy and had no energy reserves due to her tiny size.

Forced to go home

After the second five day stay in hospital I was discharged with a tub of formula. I certainly didn’t want to be discharged as I didn’t feel mentally ready and didn’t want to rely on formula feeding, yet felt this was provided as a quick fix.  Had I been allowed to stay in hospital a few more days to allow breastfeeding to become established, it would have saved the NHS substantial costs in the long run. Go figure!

Incorrect formula preparation instructions

An outreach nurse verbally advised how to make up the formula: Boil the kettle and pour 60ml of the water into a bottle, leave it to cool for the next feed; then, when formula was required, add powder to the water, mix and warm ready to feed.  These instructions are not only wrong but they could have resulted in tragedy, as formula powder is not sterile it must be added to freshly boiled water no cooler than 70oC.  Yet I was told this method of making up formula was quicker when you had a hungry baby waiting for a feed. Nothing was mentioned of the risk to Hermione’s health.  I was also informed to increase her formula top ups to 3oz after about a week, even though they knew I was aiming to exclusively breastfeed.

My feeding routine was thus: breastfeed first which took anything from 40 minutes to 1 hour, then top up with 2oz expressed breast milk if I had enough or formula, then express breast milk, then sterilise equipment ready for next feed. Hermione's small size meant I found it very difficult to position her to maintain good attachment. After trial and error I found the rugby ball hold using a cushion was the most effective and was also the best for eye contact. She was feeding almost constantly and I was exhausted.  I could see no end to the formula even though Hermione had cut the volume down to around 1oz, I still didn’t have the confidence or the know how to stop the top ups.

Dropping the formula top-ups


I visited my GP at four weeks and explained how I was feeling and how badly I wanted to exclusively breastfeed.  He said “just go for it” as Hermione was now 5lb and much more content. I still had little confidence but decided to drop the daytime top ups and maintain nighttime top ups.

At week five Hermione had a seven hour growth spurt which lasted until early hours.  The next morning, for the first time, I had the let-down feeling and finally knew I had enough milk.  She slowly but surely gained weight and went from under 0.4 centile to 2nd centile by six months, at 14 months she had reached 50th centile. Hermione never vomited after she ceased consuming formula. She was also much more satisfied and would go then around 2 hours between feeds.

The impact of early formula feeding

Hermione has suffered health complaints since leaving hospital.  At nine weeks she developed an inguinal hernia which was promptly and successfully repaired under general anaesthetic.  She also developed eczema at four months, two months prior to commencing weaning onto solids. It began as small raised red dots, which started itching, went raw with her scratching, and then were weeping and bleeding. First she had them on her legs, then elbows, chest, back, arms, hands, shoulders, neck, hands and face. At its worse the only place not affected was her nappy area and feet.

Blood-stained sheets


Hermione was constantly scratching and she wore scratch-sleeves to bed. She'd get worse in the heat but had to stay covered to stop her scratching, it caused her considerable distress. Between 4 and 7 months she barely slept at night, she was in pain and her sheets were always blood stained. Her condition peaked just before 7 months and another mother suggested antihistamines. My doctor begrudgingly prescribed them and Hermione slept for the first night in 3 months!

Despite its severity, the cause of her eczema was never medically investigated. Instead, I was simply told to treat the symptoms. I tried Diprobase, Doublebase then found Aveeno cream worked best with a steroid for flare ups. Doublebase emollient bath additive and aveeno bath oil were useful for bathing instead of soap. When Hermione’s face got bad, our doctor suggested using Sudocrem, but this made itching worse. The next doctor we saw prescribed antibiotic steroid and oral antibiotics which didn't really help. I then discovered Burts Bees petroleum free ointment. It worked wonders on her face so I used it on the rest of her too and it really helped to keep her moisturised and heal her broken skin.

Diet-wise, I decided to gave her goats milk, cheese and sheep's yoghurt as I suspected that cows dairy was triggering her. The health visitor advised me against this so I switched to cow dairy products. Immediately, Hermione had diarrhoea and her eczema flared up for a month until I switched back to goats and sheep dairy.

As a knock on effect, Hermione has to avoid all foods containing nuts until three years old; she is more likely to be allergic to nuts as her allergy system has already been sensitised by the cow’s milk formula.  Inguinal hernias in premature babies and eczema are conditions twice as likely to occur if the infant has received any artificial feed prior to 6 months.  Therefore, had I been supported properly to exclusively breastfeed whilst in hospital it is more than likely both conditions would not have arisen, and Hermione would never have had to risk general anaesthetic at such a young age.  I have also suffered postnatal depression as a result of the largely appalling, non-existent breastfeeding support.

Extended breastfeeding discouraged


But the fun and games didn’t end there. I endured further bad advice from a health visitor at Hermione’s 12 month check when I was told she didn’t need breastfeeding anymore and could have cow’s milk.  I explained about Hermione’s eczema with cow’s milk being the likely cause and was then told to give soya milk instead of breastfeeding.  I refused and pointed out how breastfeeding was helping her immune system to overcome eczema and that the guidelines state to breastfeed until 2 and beyond. The last piece of advice was to reduce the number of breastfeeds to 3 a day and always after solids.  By then I was so incensed with the appalling advice that I just breastfeed my daughter there and then and got the surprised comment, “wow, she’s enjoying that isn’t she”.  That said everything; the health visitor obviously had no knowledge or experience with breastfeeding past six months and just gave advice based on formula feeding guidelines.

But there is a happy ending to this story… Despite the appalling advice and lack of support, I am still happily breastfeeding Hermione at 20 months and will continue until she self-weans.  Her eczema has completely cleared since I stopped giving her soya products at 14 months; and within 3 weeks her skin has healed.  I reintroduced some cow’s milk at 17 months with no ill effects and she can tolerate a little soya as well now.


It’s a shame I’ve lost faith in healthcare professionals. They should have been supporting a vulnerable and impressionable first-time mother.  These struggles really marred my enjoyment of motherhood and still do to some extent, but I’m determined never to be undermined again and always stick to what I believe in.

Submitting the complaint

I decided to write letter of complaint, which was so difficult at first, but suddenly the hurt just flowed out of me. There was a lot of crying involved. I was able to find a policy or procedure that had been breached for every incident. I submitted my complaint to the chief executive of the hospital trust (NHS UK). I received a dismissive response so wrote another complaint. I then had a meeting with 2 hospital staff. Read all about my complaints process here.

Unfortunately, my husband has not been very supportive. He didn't even read my complaint letters and has the opinion what's done is done and I should stop going on about it. Yet this fight is important to me. I find it completely incomprehensible that some people don't even try breastfeeding. To me, there is no choice. Breastfeeding is the only way to feed a baby.”


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Monday, January 20, 2014

Embarrassing Tricks of The Mommy Wars


The Mommy Wars – the mythical battle to ascertain who has the biggest parenting-penis. It’s bloody, it’s gory, and it features a hella lot of faulty logic. Let's take a look at the 15 most common badly-thought-out tactics that mothers resort to in their fight for maternal supremacy.


Trick #1 Ad hominem move

This Latin phrase means ‘to the person’. It involves shifting attention from the point in question to some non-relevant aspect of the person making it. A common flavour of this approach is to question the speaker’s mental health. Attacking the character of the person with whom you are arguing rather than finding fault with his or her argument is a technique of rhetoric. As a debating strategy it is an epic fail because discrediting the source of the argument usually leaves the argument itself intact.



Trick #2 Anecdotes

Ahhhh the humble anecdote. The temptation to over-generalize on the basis of a potentially misleading particular experience seems to be irresistible in the Mommy Wars. However, the problem with anecdotal evidence is that you cannot generalize from situations where there are known to be considerable variations in how people respond.

There’s also another problem with anecdotes: the assumption that the case generalized from actually has the characteristics you think it does. Here's the snag, anecdotal evidence is often clouded by wishful thinking. Such wishful thinking is dangerous as it puts a veil between us and the truth. Your child is perfectly healthy? How are you defining ‘healthy’? How are you measuring it? What proof do you have that he is ‘perfectly’ healthy? Is such determinate proof even obtainable?



Trick #3 The correlation =/= causation safety net

If all else fails, recite the mantra “correlation does not mean causation”. Yup, this tactic was also utilised by the tobacco industry: Prove beyond any doubt that tobacco directly causes lung cancer!



Trick # 4 “Most people do it”

If “most people do it” (whatever “it” may be), the assertion is that the aversiveness of the act should somehow be lessened and standards yoked to prevalent behaviours. Many mothers use this excuse to make the action in question (be it formula feeding, spanking, circumcision or whatever) seem acceptable. Saying ‘most people do it’ amounts to saying that such actions are socially acceptable. However, just because something is socially acceptable it does not follow that it is morally acceptable, or even logically acceptable.



Trick # 5 “It’s not child abuse”

Here, the mother attempts to excuse her own wrongdoing by picking out companions in guilt who are far guiltier than herself. This ploy is known in psychology as ‘contrasting’ or ‘defensive projection’. Examples include: “Formula is not poison”, “It won’t kill him”, “A light smack on the hand is different from a beating”, “Better to circumcise now than later when he’ll remember it”, and so on. Take the formula example for instance, just because poison is worse than formula, does not mean that formula is healthy. It is sheer wishful thinking to suppose that other people’s bad behaviour in some way legitimises your own.

A popular double wammy: formula contrasted with poison and starvation.

Trick #6 The ‘good parent = martyr’ assumption

The argument goes: If you don’t always put your own interests first, the only alternative is to be a martyr. This, of course, is a false dichotomy because there are in fact many more options than the two extremes given here. For example, you might decide to devote your time to your baby during their infancy when arguably they are in great need, but when they are older, spend more time on yourself.



Trick #7 ignoratio elenchi

Ignoratio elenchi is the Latin name for missing the point. Sometimes it’s intellectually easier and more self-serving to miss the point, than to expend effort in understanding it.


Trick #8 Irrelevance

Irrelevance is the sister of ignoratio elenchi. Shifting discussion away from the point at issue by bringing in matters which don’t relate directly to it. When used as a ploy this turns the debater into a quasi-politician where she avoids giving straightforward replies to direct questions. Other forms of irrelevance involve introducing a red herring or ad hominem (getting personal) or introducing anecdotal evidence. More often mothers do this due to a lack of mental focus: the result of failing to appreciate exactly what is at issue.

Godwins Law bonus. Nice touch.

Trick #9 “It never did me any harm”

A common and particularly irritating double whammy combining rash generalisation and anecdotal evidence. Basically, a mom defends an unattractive parenting practice on the grounds that they survived having the same thing done to them. The implicit argument goes like this:


  • You say that formula feeding is harmful.
  • I had was formula fed, yet I haven’t been noticeably harmed.
  • Therefore you have insufficient grounds for condemning formula feeding.


This trick is particularly omnipresent in the Mommy Wars. Simply switch ‘formula feeding’ with any of the following: incorrect car seat usage, smoking during and after pregnancy, circumcision, spanking, ear piercing or any other parenting practice which has been shown via reputable empirical evidence to be risky. It is entirely consistent with formula feeding et al causing damage to a child’s physiological wellbeing that some instances of it leave some children entirely unscathed: the claim is not that every instance of formula feeding causes serious harm. Rather, that in a large number of cases it can cause physiological damage. The fact that someone was formula fed and remained apparently unharmed in no way justifies the practice. In extreme cases, this style of arguing can be a crutch for morally disturbing wishful thinking. Indeed, sometimes the assertion “It never did me any harm” is simply false. Some harms are transparent (see Trick #10).


Trick #10 The schoolyard comparison

Common in debates of infant feeding, The Schoolyard Comparison involves the rhetorical question: “In a class of 30 kids, can you tell who was formula fed and who was breast fed?” To which the answer is - of course you can't bloody can't. That's what scientific studies are for. If the impact of lifestyle choices on health was so obvious, women wouldn't have been positively encouraged to smoke and eat liver in pregnancy for decades. Can you look at a group of adults and tell whose mother smoked when they were in utero?


Trick #11 Pedantry

A niggling and inappropriate concern with detail, often at the expense of what is really important in an issue. Slavish rule-following, particularly in the realm of grammar and syntax, is a typical mark of the pedant.



Trick #12 “Prove it”

A cousin of trick #3, ‘Prove it’, also known as ‘proof by ignorance’ or ‘OMG SAUCE’, is an informal fallacy in which lack of known evidence against a belief is taken as an indication that it is true. Often the user demands that something be proven beyond doubt that a certain parenting practice is harmful. However, as I explained in “The Art of Denouncing Breastfeeding”, absolute certainty is not possible in most spheres of human knowledge. Proof requires us to move only beyond reasonable doubt. It cannot require us to remove all possibility of doubt whatsoever.

Kudos to this multitasking feast. It combines tricks #1, #4, #8, and #12!

Trick #12 Sophistry

A display of cleverness which doesn’t respect the principles of good reasoning but smuggles in unlikely conclusions under a cloak of sham argument. It stems from the Sophists, ancient Greek teachers who allegedly taught their pupils how to win arguments by any means available; they were supposedly more interested in winning arguments than finding out the truth. Sophistry is a catch-all term for a whole range of dubious tricks including begging the question, circular arguments, equivocation, formal and informal fallacies and pseudo-profundity.


Trick #13 Shifting the Goalposts

Changing what is being argued for in mid-debate. Also known as ‘Threadjacking’, this is a very common move to avoid criticism. As soon as an arguer sees a position becoming untenable, she shifts the point of the discussion on to a related but more easily defended one.


Trick #14 Zig-Zagging

This is closely linked with Shifting the Goalposts. Zig-zagging involves hopping from one topic to another, typically from one relevant topic to another irrelevant one. This can be particularly frustrating in discussion because zig-zaggers never rest long enough on one topic for you to present your criticism; by the time you have started to put forward your objections, they are off on a different tack. Zig-zagging is often simply due to superficiality and not having the intellectual energy to follow any discussion through. This trick makes it almost impossible to engage in serious debate with the person because any criticism is likely to seem irrelevant to the topic currently under discussion.



Trick #15 Strawman

I have spoken extensively about this gem before. A strawman is a misrepresentation of an opponent’s position, created for the express purposes of being knocked down. You see, everybody needs a victory or two for purposes of morale. If real ones are nowhere to be had, the desperate debater will wallop out a straw man.



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Tuesday, January 14, 2014

Triumphant Tuesday: The Reformed Formula Feeder

What does it take to be a born-again breastfeeder? In a word – courage! It takes courage to accept that you could have done better, courage to try again, and courage to face unpleasant memories and painful truths. Success is the award for those willing to rewrite their story. Yet success, as sweet as it tastes, is not without its paradoxes. Success can birth pride and a sense of fulfilment, and at the same time, it can reopen old wounds, triggering feelings of guilt and regret.

Here is one mother’s emotional journey of failing to breastfeed her daughter, and then succeeding to breastfeed her son.


“I am part of a breastfeeding family. My mom fed me till I was 18months. My cousins all were breastfed to at least this age. My mom was an LLL member and she had all her friends breastfeeding. Her best friend is an IBCLC. Breastfeeding is my norm. I was raised with it. I didn’t think there was any other option.


When I fell pregnant with my daughter I was absolutely confident that I would breastfeed. I purposely didn’t buy dummies, or bottles or formula. I was going to do this. End of story. My gorgeous perfect little girl arrived in this world on the afternoon of the 14th of May 2009. Instant love.

She was born via forceps as she had the cord around her neck three times and her heart rate dropped dramatically. Yet despite her traumatic entrance into the world, her apgar was 9 and then 10. She was healthy. We were so thrilled.

Refusal to latch

In the delivery suite I struggled to latch her. I kept asking for help and a million different midwives came to try and force her on. I remember even at this early stage in life, she cried and cried. And all I wanted to do was latch her on and feed her and make her feel better. But she struggled. After 24 hrs in the hospital begging nurses over and over to help latch her I was bleeding and my baby girl was frustrated. She would cry her heart out. Latching just seemed to make it worse, no matter what hold we tried.

Formula

The hospital midwives told me that she was hungry and needed formula. A paediatrician examined her and reiterated that formula would kick start her kidneys. Eventually she was given a few ounces of formula because she hadn’t passed urine (although she was passing muconium). I called in a lactation consultant to help, however she didn’t arrive until the morning we were discharged from the hospital. My daughter was in her second day of her life and already my dream of breastfeeding was in tatters.

The lactation consultant said I had no milk yet and also that my daughter wasn’t using her tongue to suckle. Instead, she was shredding my nipples. I was told to top up with formula and to start a regiment of 10 min on the breast followed by 10 min pumping then a break and 5min pumping. Everything was on a schedule.  It was devastating. I knew top ups were a bad idea. But she was the expert and she was telling me to.

Supplemental Nursing System

Whilst I was pumping my husband was told to top up our daughter with a bottle of either expressed milk or formula. This was the beginning of the end. Over the following weeks my husband and I moved heaven and earth to exclusively breastfeed. I did everything in my power. I pumped continually, I took all the potions and medications: egglynol, domperidon, herbal remedies such as mother milk tea and prolak. I even tried a SNS, but when I used it I couldn’t latch her without help from my husband. My baby hated the feel of the tube and I had to feed it in a specific way for her to take it. I couldn’t do that and hold her at the same time. So I was unable to take care of her alone. It was awful.

Nothing seemed to work. Although my breasts would become painfully engorged I could rarely express more than 20ml. The LC said this meant I had a very low supply.  I was confused and sad. It felt not only like my body had failed me, but also my child.

The whole feeding process was mechanical, clinical and terrifying. I had lists of when she fed, how long she fed for, and how much top up was used. Feeding involved pumps and devices and watches. It was immensely stressful. I would wake up in the night adding up ml's and working out how much formula vs how much breast milk she had had. It made me feel completely inadequate.

There was one golden day when my baby was around 8weeks where she fed from me all day with no top ups. But this was all. Eventually, because of the SNS and bottles, she stopped latching completely at age 2 and a half months. I carried on trying to express, but could never express enough.

Giving up

At 4 months and 2 weeks I gave up. I was completely gutted. Those 4 months of struggle robbed me and my daughter of so much. It destroyed my faith in my body and my ability to mother. I was now the first in my family to formula feed. It was soul destroying. It seemed like a reflection on me as a mother. The first priority is to feed your child and I had failed her.

A second chance


When my daughter was 2 yrs and 7 months, my son was born. Up to the moment he was placed in my arms I was convinced I would have to formula feed again. I hated this feeling. It wasn’t natural to me. It felt awkward and forced. I was also convinced from my LC's previous advice that I just didn’t make milk. This time I bought formula and bottles.

But my son was so different. His birth was calm and beautiful. He arrived on the morning of Christmas Eve 2011. Our time together was peaceful and harmonious. The midwife on duty suggested that I feed him. I was incredibly nervous but decided to give it a go. He latched perfectly immediately and our journey was to be one of total joy and ease. He even slept a thousand times better then my daughter.

Milk supply, take 2



Did I have supply issues? Nope, I had more than enough milk. Not a drop of formula has passed his lips. The tin of formula I had bought ‘just in case’ was eventually thrown out unopened. The bottles passed onto a family member who would be returning to work and was expressing. Whereas the LC we saw with my daughter had insisted on a schedule to feed her, I fed my son on demand and at any opportunity. My motto was: “When in doubt get them out!”

I did see a different LC when my son was 3 or 4 days old. I did this simply for reassurance as my faith in my body had been shattered. I needed to hear he was ok. She was more than happy with him.

Empowerment


He is now almost 2 years old and we are still going strong.  The second time can be so different. It is all about having the strength to try again. In contrast to the experience of feeding my daughter which was mechanical, clinical and terrifying; feeding my son has been calm, peaceful, and gentle. It has been natural and easy.  A pleasure for us both. He enjoyed feeding, was never angry at the breast, simply gulped down his milk. Feeding him made him instantly happy and calm. I felt empowered. A true mother.

When I look back I am certain the biggest issue with my daughter was the forceps delivery and the pain it caused her. I truly believe that if we had seen a physio or chiro and I had been allowed to feed her directly from me, eventually we would have gotten it right. I know it could have been different.

Guilt


I still feel immense sadness and guilt, knowing I could have had this experience with her, knowing that I could have given her more protection from cancer, increased her IQ, and so on. It’s still a bitter pill to swallow.  I am lucky in that I have a close relationship with her. Lucky that she is so healthy, vibrant and intelligent. But there is still the niggling feeling of ‘what if’. I can’t help but feel I have let her down. My husband is always reassuring me that I did my best, and I am slowly letting go of the anger I feel toward the LC.

Feeding my son has been a true gift and a healing process. It has taught me to have faith in my body again. Faith in myself as a mother. Being able to breastfeed has meant that I am able to be the mother I want to be. Formula feeding was unnatural and not who I am as a mother. It is a wonderful feeling to be able to be the natural mother I am.

If I could send a message to formula feeding mom’s who are contemplating breastfeeding their next child, I would say, do it! Throw out all your memories from the first time and view this as the first time you have breastfed. Follow your baby and just feed, feed, feed. In the end it is worth it. Just give it a go. It can be completely different.”


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