Firstly, let me congratulate you on joining The Hood. It’s a somewhat surreal and scary place but it won’t take long for the pooh obsession to settle in. In fact, it’ll pretty much start from the first pile of sticky black mess you find trapped under your fingernails. Don’t worry. All perfectly normal. That’s what your fingernails are for.
You may have already started to discover the politics of parenting is quite unique and what party you belong to all entirely depends on your feeding method, what baby transporting equipment you use and what method of collecting turds you decide on.
You may have possibly unearthed internet facts such as, your child is going to be gay. This is especially if you are bottle feeding. Bottles are unsafe and contain chemicals that mimic female hormones. They tried to make non-gay bottles which became very popular but then they discovered recently that they’re just as gay as the rest. However, the gay-soaked chemical isn’t mutually exclusive to bottles, it’s anything that is plastic. Basically everything you have probably already bought for your child will in some way induce gayness. I’m not entirely sure why this isn’t written on the information sheets provided with every baby item you buy but I have written to the WHO to see if they can shed some light on the subject.
If you are breastfeeding, unfortunately, you won’t be spared from the chemical pandemic as your breast milk will also be contaminated with chemicals. These can also cause gayness and additionally autism, lepresy and an unnatural fixation with Play doh reviews on YouTube.
As a breastfeeding mother you will also be a social pariah should you wish to provocatively offend people with your milky nipples in public. If you continue this method of injecting nutrients down your child’s gullet into toddlerdom, I would suggest you just save any further embarrassment, take yourself to the local police station and request to be put on the sex offender’s register. Plus, if you’re boob feeding a boy child, it will make him gay.
Google will become your best friend as you incessantly research every aspect of motherhood searching for the answer as to why your baby started sleeping for four hour stretches, enabling you to emerge from your torturous head fog, but then returned to fidgeting and straining all night with intermittent 15 minutes silences whereby you desperately check for vital signs. You may from time to time have to update yourself on what poo should look like for good measure and ‘what your baby should be doing now’ for added parental pressure especially if your friend’s baby is already walking at four months and a kid your mum knows through a friend she bumped into recently was doing sign language at birth.
Do watch out though for the billion know-it-alls desperate to tell you you are doing it all completely wrong and you’re actually a fuckwit. These Unsolicited Advisors of Anecdotes tend to lurk in chat rooms and internet forums desperate to impart their worldwide parenting knowledge from their one experience of motherhood. You may find me in there. But I’ve had two kids so I totes know what I’m talking about.
Most helpful of all will be this phrase. You don’t need to memorise it because it’ll be said to you at least four hundred times a day and encompasses every unknown which is pretty much everything in parenting because only the children know the rules and they’ve made a pact to never, ever let on to grown ups.
Phases may be as follows:
Not sleeping
Sleeping
Not eating enough
Eating too much
Teething
Growth spurts
Shitting themselves at 4am after you have just managed to settle them
Starting the day at 5am
Finishing the day at 11pm
Having to be held continually between the hours of 5am and 11pm
Google is also incredibly useful for diagnosing symptoms that your baby may be experiencing, drawing an inevitable conclusion that it is probably AIDS. Both my children have had several bouts of AIDS now but seemed to bounce back quickly so nothing to be too concerned about.
Finally, as a new parent, it is imperative you become accustomed to your new identity as a compulsive liar. Your baby’s hearing and understanding is incredibly acute, even from a few days old and any difficult experience you may be encountering, your baby will be listening as you recount your woes to friends, family and health professionals. Your baby will then promptly do the exact opposite leaving you looking like an attention-seeking whore who clearly hasn’t a clue what you are doing.
If you have found my unsolicited anecdotal advice useful, you may also like to take a look at my Guide to the Fourth Trimester for more of it, which doesn’t in anyway metaphorically represent what is currently residing under your fingernails.
No matter how I have fed my babies, I have always found myself at some point justifying it to someone.
The internet seems full of women trying to be heard, justifying themselves to people they’ll never know or meet; breast, bottle, pump, SNS, tube, syringe, using formula, using donor milk, nursing a toddler.
I’ve been having a lot of, “ahhhhhhhh, so that’s why…” moments of late, all concerning The Boy especially surrounding the first twelve months. I have a lot of (what I think) dark secrets about my boy but now I can make so much more sense of them, I think I want to share them, just in case someone out there relates.
My boy hasn’t *yet* been diagnosed with anything, however, he is in the process of assessments. I noticed things not progressing as they should when he was around 15 months old. Since he has started his assessments, I have had to answer (approximately) more questions than Andy Coulson has in the last several months, all relating to pregnancy, birth and beyond.
What I have discovered so far is that my boy may have a sensory processing disorder which means he is undersensitive to certain senses and over sensitive to others. The ones he is undersensitive to are very much related to touch and movement. This means he seems to need more of it. For example, liking to sleep with the top of his head pushed against his headboard/have his ‘draggy’ wrapped around the top of his head/his head pushed against a pillow. It also means that he still constantly mouths and chews things, seeking out deep pressure in his mouth.
So what has this to do with my ‘dark secrets’? Well they are thus:
I co-slept. I co-slept in a way that was probably against the guidelines in order to get a good nights sleep.
I bottle propped. Especially at his nap times.
I stopped breastfeeding to suit me.
Actually…writing it down seems far more pathetic than the massive swirling guilt whirlwind that was in my head but I’ll carry on anyway.
Ted was a high maintenance baby. He was very kinaesthetic and so touch and movement played a big role very early on. He spent a very large proportion of his time attached to me, either in the sling or on my boob. Those first 8 months, I think he slept with a nipple in his mouth pretty much for the full 12 hours. He is still very much attached to me and I carry him around like a baby chimp, which has quite an impact on my spine as he is a tall, 3 stone, two and a half year old. I have a left bicep like Arnie and a right hip like a 90 year old. Not really a necessary part of the story but I thought if I martyr myself slightly, you’ll a) feel sorry for me and b) forgive me for my parenting fails *according to many parenting forums*.
He would fall asleep with his face pushed against my chest then I would have to have to move his face to the side once he was asleep
Had my boy been my first child, I would have definitely had a breakdown. The physical, emotional and psychological demands of having a baby attached to you day and night really takes its toll. But this was baby number two. And with that you don’t analyse anything. You’ve already paralysed yourself with analysis the first time round so second time, you just do it. I’m not planning on a third but I can only imagine I’d be practically apathetic.
So, I just got on and co-slept without worrying about smothering or suffocating. Just as well because unbeknownst to me, the boy required deep pressure when sleeping which often meant he would be wedged under my head or just sleep in the sling with the stretchy material over the top of his head, because I somehow knew he preferred it. I would have NEVER dared try this first time round.
Generally on a pillow, under my duvet, under my chin. NOT ISIS guidelines but we slept and that was all I cared about during those early sleep deprived months
Also unbeknownst to me, the boy seeked deep pressure stimulation in his mouth, hence the attached to nipple so often and also the biting – which for the record, was not a ‘phase’ anyone could work through. He would clamp through the nipple and not even care/notice the blood covering his face. I however did, and decided to stop feeding from source when he was ten months old. I’d previously put this down to his bottle chewing habit, but actually, it was all part of the same thing.
Then started the bottle propping. This is the bit that I feel most ashamed about. As soon as the full conversion to bottle happened, the boy no longer wanted to be held close. At the time, it seemed that he loathed being moved once he was asleep. I would lovingly cuddle him close with his bottle until he fell asleep then attempt the ninja-like transfer but he would become almost rageful at the disturbance until after just a few nights I just laid him in his cot, placed the bottle in his hand and left the room with a heart so heavy, full of self loathing and remorse. But he fell asleep and stayed asleep (apart from still waking several times a night for more milk but there was no rage at least).
There was a few days when he was about 18 months when I was ‘allowed’ to cuddle him with a bottle, and I hung onto every second, willing it to remain in my memory bank for all time.
I would sneak into his room and remove the bottle from his bed and stare at him. He is two and a half now and still so reliant on his bottles of milk at nap times. But instead of having to use my night vision to pick out the bottle shape from his bed, I now have to search on the floor as it generally gets launched across the room like a missile once it’s been drained. This is the time my husband and I become frozen to the spot, as the thud sounds and we try and determine whether he’s actually asleep or just silently playing, neither of us actually daring to go and check just in case we’re spotted.
There are risks of increased weight gain with prolonged bottle use, and this is definitely something I am witnessing with the boy. However, I know it is temporary. There will be a day he no longer needs a bottle and then I can just sign him up to a boot camp, or something. Ergo, I’ll cross that bridge when we come to it.
So all in all, I suppose by writing this all down, I can let go of the guilt over how I have ultimately fed the boy. I have a valid reason for stopping breastfeeding when I did (and quite frankly, after all I blog about, it is utter lunacy that I should feel that way). I can also feel proud that I followed his lead and didn’t become a crazed loon at the fact he was in my bed, sleeping on my actual body or trussed up in a sling/attached to my nipple for most part of the day.
I also want to say to first time mums out there. Don’t start panicking that you might have a spectrum child on your hands just because they’re a bit high maintenance, but trust them to know what they want and only you will know that. So no matter what the forums say is ‘right’, how the old school did it, what opinions people have, don’t be afraid to follow your child’s lead. You will not make a rod for your own back but can hopefully break up that rod and bury it when you discover it was just what your baby needed.
There is no way for me to sugar-coat this so I’ll just come out and say it. The infant feeding support available to women, whatever side of the camp they are, sucks major ass. It’s not just a shambles, it’s an omnishambles.
So now that I’ve said it, let me quickly define what I mean by that, especially for those that work in infant feeding support and may now be thinking, “Hang on a minute, Love…what the bleeding nipples you on about?”
There is an argument that, it is breastfeeding promotion that needs to change. That it’s thin veil of ironical informed choice currently puts tremendous pressure on new mothers and leads to guilt overload and feelings of failure if things don’t turn out how the WHO prescribe. There is another train of thought that thinks there isn’t enough pressure to breastfeed and the promotion needs to be ramped up with the inclusion of stricter controls being put on the availability of formula and the obliteration of blatant formula marketing campaigns cleverly using follow-on milks.
Picture credit: somewhere off the internet
I’m not sure that either of these things will change in the short term – the fight is against two equally powerful Goliaths. Breastfeeding propaganda has been around for centuries. Formula has a very valid place in the first world and the anger evoked in fighting against either of these things is like drinking poison in the hope it will kill the enemy. Although there is hope.
I, personally, have a gripe against the upper echelons of policy makers, health ministers and treasurers who act upon an assumption that they know what the problems are by discussing statistics in a focus group. Those responsible for deeming infant feeding only important enough for an afternoon’s lecture for medical students leading to GP’s prescribing possibly unnecessary treatments for both breast and bottle fed babies. The lack of support available to those finding themselves unable to breastfeed due to the misinterpretation of the Unicef document that highlights the importance of eradicating formula promotion, but not the eradication of support for those using formula. The struggling labour wards with ridiculous turn around times and tick boxes to complete in order to sate the statisticians. The lack of continuity of advice for breastfeeding mothers. The lack of any advice for bottle feeding mothers. The lack of funding for those desperately trying to support breastfeeding women. The postcode lottery that is associated with anything to do with the NHS and whether the hospital you find yourself birthing in has a milk bank associated with it. In fact, the milk banking system full stop. That is why I believe infant feeding support is an omnishambles.
Back in November, I created an Infant Feeding Survey, with the purpose of finding out from hearing real women’s stories and views, what their infant feeding experiences were and how they felt it could have been improved. I had in mind, to use this information as a way to build on the already brilliant foundations of support in the local area but also to highlight other areas that may be lacking, and if there was a way to address some of the above, without having to drink any poison.
With the very kind help from The Fearless Formula Feeder, Lactivist and other internet forums, representing both the formula feeding and breastfeeding communities, I had 563 responses.
Now, I’m not silly. I know that isn’t enough responses to substantiate my hypotheses that that the WHOLE support system is shambolic and out of the 563, roughly 30% of the answers are UK-based (the rest are women from Australia, New Zealand, Canada, USA, Romania, Saudi Arabia and South Africa.) However, despite the different localities on a world map, the answers are all surprisingly (or not so surprisingly) similar and echo the same message throughout – a lack of support, or perhaps more importantly, lack of THE RIGHT support.
There are two things that I think came across loud and clear from the results of the survey which are as follows:
#1: Informed choice is not that well informed when it comes to mixed feeding or formula feeding. For those women who know they will have a short maternity leave, that have lost both breasts to cancer, that have survived sexual abuse, for those that adopt, have surrogate children, that foster, that have a high risk of PND, that are on medications that are necessary and incompatible with breastfeeding, for those with multiples that are keeping their options open and for those that just do not want to breastfeed – advice is not forthcoming and sometimes detrimental to their maternal mental health. 5-17% received advice from health care professionals when they found themselves needing formula, whereas 31% researched guidance on the internet and 75% of those that ended up using formula just followed the instructions on the box (out of 325 respondents).
However a baby is fed, there will be risks associated with it. Breastfed babies are readmitted to hospital because of low weight gain and dehydration. Formula fed babies are five times more likely to be readmitted due to gastroenteritis, according to a 2009 article in the Telegraph, which also reports on bottle babies being put at higher risk due to lack of information since bottle feeding was removed from antenatal teachings. Hospital readmissions from incorrectly made up formula is not really formula’s fault, but the lack of education that surrounds the correct use of formula. This NHS Change for Life leaflet is available with good information on sterilising and correct use of powdered formula and follow on milks. However, it is not freely available to purchase unless you ask for it. I can’t imagine many first time mums having the balls to request a copy.
Most risks can be very easily avoided if women are given the correct information and support, prior to birth and in those early days rather than both breast and bottle feeding mums being left to their own devices. Which leads me to…
#2: The criticality of those first few days in receiving the RIGHT support enabling more women to achieve their breastfeeding goals. Nearly 94% of respondents (529 out of 565) had an intention to breastfeed. But many of these women seem to have been failed at the first point of contact. This is for many anecdotal reasons about conflicting advice, lack of any advice or detrimental advice. Mainly though, because this is where the ‘one size fits all’ support seems to come into play which seems to be paralysing the healthcare professionals. 72% of the 523 who responded to the question about breastfeeding complications experienced ‘sore nipples’ with the second most popular answer being ‘baby wouldn’t latch’ (35%). When issues arose which required intervention in the form of supplementation, 82% used a bottle (302 out of 364) with the majority using expressed breast milk, ready to feed or powdered formula. The vast majority of these mothers felt completely unprepared for the complications experienced which had a harmful effect on their breastfeeding experience and/or their maternal mental health. It really isn’t any wonder there is such a dramatic drop off from breastfeeding in those early weeks.
Supplementary nursing systems, which are very effective at supplementing when a baby is latching but not gaining weight, was used by 10% of the 364 respondents and screened donor milk was used by 3 out of 383 respondents. That is less than 1%.
Cup feeding which can be useful for supplementing without causing nipple confusion was used by 16%. Cup feeding can be tricky and is usually carried out by the partner whilst the mother can express. How many women and their partners are taught the techniques needed for cup feeding prior to birth? How many are taught the reasons why cup feeding might be necessary? Not that many, I’d guess.
It also seems very strange to me that so much is done to promote the health benefits of breast milk, and yet the availability of donor breast milk is so dire when it could be so beneficial to those many women finding themselves facing complications that are only being resolved with limited options. The following video I have blogged about before, describes how the use of screened donor breast milk has a significant positive psychological impact on new mothers facing challenges to their own health or the health of their newborn infants, which in turn has a positive effect on milk production, sometimes several weeks down the line. It is mainly anecdotal but perhaps more research should be carried out on the maternal mental health benefits and breast milk production when screened donor breast milk is routinely offered as a choice.
Screened donor breast milk costs £120 per litre compared to £5, which goes a long way to show why it isn’t routinely offered as an alternative when breastfeeding isn’t going to plan. However, if the research and statistics are correct in assuming formula is costing the NHS millions, surely it is a worthy investment? It’s all very well preaching what we should all be doing with guilt-inducing poster campaigns (which probably cost a fair bit), but why don’t government invest more where it could really make a difference.
A pilot scheme that involves a telephone service to new mothers who have been discharged from hospital, enquiring about how they’re getting on and whether they require further assistance with infant feeding, costs £6000. No money in the pot to try it though apparently. The cost of women being trained as volunteer peer supporters? Approximately £100 per person. Are these volunteers able to access mothers who cannot leave their homes due to post operative issues or multiple children? No. Would they? In a heart beat, and would also happily volunteer their time in hospital should they be able to untangle themselves enough from the red tape to be able to step foot in the hospital. Would the midwives be grateful for volunteer peer supporters in hospital? I should imagine so. That will leave them enough time for the piles of bureaucracy they are currently disappearing under.
I know, from my own personal experience, after my pubic bone and vagina was left in tatters following the arrival of baby #1, I was unable to leave the house. I also had postnatal anxiety due to the complications I was having with breastfeeding. When asked how I was feeding my baby, I replied “bottle with expressed breast milk”. A box was ticked and no further comment was made. If I was offered a volunteer peer supporter to pop round for a chat, I would have jumped at the chance. If someone had phoned me to ask how infant feeding was going, I may have asked for help sooner.
Perhaps there are a few simple changes that could be made easily and cheaply that might make a difference:
GPs and other healthcare professionals having a referral pathway to enable them to quickly identify local resources which are better placed to help with feeding problems, on top of keeping regularly up to date with infant feeding evidence. This will mainly consist of every arrow pointing towards the local infant feeding support group. Supplementary nursing systems being routinely offered as an option in hospitals when a baby is latching but milk production is delayed – apparently they are freely available in hospitals but few midwives are au fait with their correct application. Educating prenatally on the symptoms of tongue/lip tie and the conditions which may contribute to low milk supply such as polycystic ovary syndrome. Educating prenatally on the most common complications associated with breastfeeding and how they are resolved. Having tongue/lip ties routinely checked in hospital and not just presuming that 2nd,3rd,4th time mums will not experience breastfeeding issues.
If you wish to read through the infant feeding results and share your own interpretation of the results, you can read the full survey results here. It certainly makes for some very interesting reading.
I had a perfect pregnancy and a natural, pain-relief free labour followed by the delivery of my beautiful 8lb 4oz boy at 41+3 weeks by ventouse straight onto my stomach. We had our first blissful breast feed straight away followed by me having a third degree tear surgically repaired. The tear gave me no problems afterwards and so continued a lovely breast feeding relationship until Charlie self-weaned at 1 year old. He’s now 4.5 years old and I’m very thankful for the support from my husband and midwives that enabled Charlie and I to have this great start.
Baby Number 2: A whole different ball game…
I had a very eventful pregnancy to say the least – a potentially fatal (for the baby) blood clot under the placenta which caused some massive bleeding in the early days; gestational diabetes; severe polyhydramnios (excess amniotic fluid); a three day stay in hospital at 28 weeks for steroid injection therapy to ready my baby’s lungs for premature birth incase I couldn’t hold all the fluid to term; my waters breaking in the night at 31 weeks, flooding my parents’ house and the ambulance (or so it seemed!) while my husband was blissfully unaware and unreachable at Glastonbury festival and then another three day stay in hospital for antibiotics (to limit the chances of infection setting in) and monitoring. During this time, the baby’s heart rate kept dropping because his head was pressing on the umbilical cord, so I was prepped for an emergency c-section. Luckily, they used an internal manipulation technique to try to move him off the cord in a last ditch attempt to avoid the c-section and it worked, so things settled down a bit!
Suffice it to say that none of this was helping me to prepare for birth and breast feeding as I had with my first. However, breast feeding was never really far from my thoughts – obsessed much?! At each new medical development thrown at me in the pregnancy, I researched the difficulties I might encounter and how to avoid them – breastfeeding after c-section, breastfeeding a baby born to a diabetic and also breastfeeding a premature baby. I learnt that if you give birth prematurely, your milk changes to match the needs of your baby and that, as with a full-term baby, nothing can match breast milk in terms of nutrition, prevention of illnesses (such as necrotising enterocolitis – a horrible illness that is common in premmies, especially formula fed ones) and reparation of possible damage inflicted upon babies who are not in the optimum environment. I knew that breast milk was arguably more important for a premature or sick baby than a healthy, term baby, yet still, my research had shown that shockingly low numbers of babies in NICU were breast fed and the dire statistics were depressing – why were so many premature babies leaving NICU being formula fed? I remember crying to one of the nurses as we were shown around the NICU that (amongst the other things worrying me) I desperately wanted to breast feed my baby and, against the odds, give him some semblance of the bright beginning his brother had.
In the ambulance after the birth
Finally, at 32 weeks pregnant, I gave birth to my 8 week premature baby within an hour and a half of being discharged from hospital on my lounge floor with my husband and 2.5 year old (plus the 999 man on speaker phone) as the midwives! Max was beautiful and thankfully was making some very quiet attempts at crying. I spent a long time with him skin to skin under my top, on my knees and still attached to him (again, thankfully, as it was a further half an hour before he was given some oxygen) before the ambulance arrived, and with it, a sight for sore eyes – a qualified midwife, who was fantastic and took charge of the floundering paramedics! Max was doing great in the ambulance and lulled us in to a false sense of security to the point where I asked, very naively, if I could try to breast feed him! The midwife said that we’d better let him concentrate on breathing for a while – he was blue and had an oxygen mask on at the time, so fair enough I suppose!
Anyway, on arrival at the hospital, Max was taken straight to NICU and so began our 6 week NICU journey. It was the worst and best time of our lives – the best, only because we had Max – the worst, for obvious reasons. It’s heartbreaking seeing your tiny baby (4lb 9oz) in the incubator, with wires everywhere, knowing that they should still be inside and with you at all times, hearing your voice, comfortable and warm in the absence of pain and hunger. You feel helpless and useless and, I suppose, a little redundant. This last point brings me to the whole breast feeding issue again – I felt that pumping milk for Max was the best thing I could do for him and me. Without it, (in my mind) he wouldn’t get better and I wouldn’t have a purpose. It was something I could do that nobody else could.
Max in NICU
With this in mind and colostrum ready and waiting as soon as the placenta had been delivered, I started pumping. Max spent the first few hours of his life on a ventilator and then was in oxygen in his incubator so we were unable to hold him until about day three. During these three days, I hand pumped like mad! I was well supported with this by the midwives and NICU staff and, for the first twelve hours or so, I took numerous little cups of ‘liquid gold’ in for them to put down Max’s nasogastric (NG) tube. After that point, however, the liquid gold was a little less forthcoming and I was feeling the stress more and more as I could only get a couple of drops out at a time despite pumping for ages. I tried an electric pump but I still could only get a few drops and these were wasted as they got stuck in the pump tubes. The little I got hand pumping was soaked up with a cotton bud and I desperately wiped it around his mouth, as they began (without telling or asking me) to give Max formula – I asked for donated milk, but with no milk bank, what else could they do? I felt better knowing it was only temporary though and sure enough, my milk came in on day three. This coincided with us getting to hold Max for the first time! It was very emotional and from then on, our moments of kangaroo care were everything to us. The second time I got to hold him, I was allowed to try our first breast feed. I was told not to expect much as Max probably wouldn’t be able to coordinate his suck-swallow-breathe reflex or be strong enough to latch. However, he latched straight away and began sucking! Everyone was really shocked and from then on I asked constantly to feed him myself. This is where the staff became slightly annoying to me – we were limited on time to hold our baby and I was denied the chance to feed him myself regularly because they always ‘wanted to see how much he was getting’. This all seemed very backwards to us, but they were the experts so we reluctantly did as we were told.
My first cuddle
My pumping schedule was very strict. My pump went everywhere with me when I wasn’t at the hospital (I was discharged a week after Max’s birth) as I had to pump at least every three hours. Little did I know at this point that this was to be my routine for the next six weeks! Although I was a slave to the pump when I would rather have been a slave to my baby, obviously, it felt good to know that Max was thriving on my milk, and for the first ten days of his life, this is what he did. It was strange however that Max was unable to poo unless given a glycerin suppository and the poor little thing was having one of these every other day and still not much was coming out. On day ten, Max went into respiratory distress and was back on the cpap ventilator – horrendous! They suspected an infection but none of the tests confirmed anything but antibiotics were started none the less and within a couple of days, he was off the machine and seemed to be recovering. The NICU staff were medically excellent, but it became clear, at this point, that their knowledge of breast milk and breast feeding had a lot to be desired. As Max’s recovery had become unpredictable, they put a lot of pressure on me to have him on formula rather than breast milk. Max was still having difficulty with pooing and had begun to have a distended stomach and was being sick a lot after feeding. I asked if he could have a bowel blockage and they said that it would have been spotted on stomach x-rays he’d had previously.
I arrived one morning, when Max was about two weeks old to find that, without asking or telling me, they had replaced my milk with formula. Nobody appeared to think that it was a big deal until I broke down in tears. I was told that they thought Max may be dairy intolerant and was reacting to the cow’s milk protein in my milk (from my diet). I wanted to go dairy free but was strongly discouraged – apparently, the supplement pills I’d have to swallow were unpleasant and as big as my head (or something like that) and the diet was painstakingly difficult to stick to (it isn’t) and plenty of amazing hypo-allergenic formulas were available for Max apparently. I stuck to my guns and they reluctantly sent a nutritionist to see me (who was brilliant) and I started a strict dairy free diet.
Max appeared to be getting worse and as the formula wasn’t making a difference my husband and I pleaded with them to put him back on my milk which I knew would be more gentle on his tummy. I was also worried about NEC considering his stomach issues made him vulnerable and formula feeding makes the odds of suffering from this terrible illness much worse. They kept saying no to my milk, the reason being that you can’t experiment with a premature baby. We agreed, and therefore couldn’t see why they were willing to give him second best in terms of nutrition, for the very same reason!
Max was still in discomfort and his stomach had grown large and tender and bowel loops were visible through his skin. He was still unable to poo and was now vomiting green sick after each tube feed. X-rays showed air in his stomach and inflammation of the bowel wall. He was started on another antibiotic, made nil-by-mouth and moved to a single room because of the extra care he needed. It was a very worrying time and from my research, I could tell that he had the beginnings of NEC. I knew that a premature baby’s risk of developing this horrendous disease, which kills off parts of the intestine and, if untreated, leads very quickly to death, was due to forcing milk feeds on an under-developed gut and that also, formula feeding a premature infant increased the risk of developing NEC ten-fold compared to his/her breast fed counter-parts. My husband and I were very upset, but ultimately, they reassured us that they had spotted it very early on and that the treatment would work and his bowels and his life would be saved. After days of Max being on TPN (Total parenteral nutrition – a long line inserted into his heart with lipids and fats etc being fed directly into his blood stream) only, he began to show signs of improvement. It was hard to watch him go hungry though. The lipids had ensured that he was putting on weight and he was starting to look chubby, but one of the hardest things was having kangaroo care. It was lovely to hold him once again after not being able to for a while, but he would root around for a nipple in hunger and I was told that I couldn’t feed him. This was heartbreaking.
It had now been two weeks since I had been dairy free and Max’s paediatrician, who was now on holiday, had assured me that at this point, my breast milk would be the best thing for him as it would nourish his bowel. NICU, however had other ideas. I’m sure the reason for them continuing to push formula onto Max was purely because in the short term, they wanted him to be better and it was a measurable, and let’s face it, typical way to feed premature babies, get them fat and therefore to happily leave the unit. To begin with, the staff appeared very sympathetic but I was made to feel selfish, like I was putting my need to breast feed before Max’s needs. In my mind, these needs were one and the same thing.
It felt like I was battling with them and comments from the nurse in charge began to feel very much as if she felt she had to be cruel to be kind – “most mothers would have just accepted what I’m saying and their baby would be on formula by now.” “We need to do what’s best for Max.” etc. There appeared to me to be no reason for keeping him on the new formula; the amazing, magical neocate which is an elemental (pre-digested) artificial milk which allows the nutritionist to add and take out vitamins and minerals according to the baby’s needs, but they insisted. Well, guess what? I have a predigested milk that automatically adjusts in it’s mineral and vitamin content right here ready and waiting. The only difference is that it has bowel reparative and protective qualities; is free (neocate is ridiculously expensive) and is specifically adapted to Max’s needs in particular with many other ingredients impossible to replicate and many which are very beneficial for his long term health as well as the short term. Not to mention the other psychological and emotional benefits my baby would have, long term if we could ensure a breast feeding relationship now.
They were determined though, and neocate was started, and worse, we turned up one morning when Max would have been about 37 weeks gestation to find they had given him a bottle, again without asking or even telling us. To some, this may seem trivial but I was beside myself and my husband was angry too and he told them so. Finally, the nurse in charge let her true thoughts come out – “You need to stop this now, you will never breast feed your baby, even Dr.__ (Max’s paediatrician who was on holiday) agrees. There comes a point where it is cruel not to allow a baby to suck when they’re getting fed!” I was given a bottle of neocate and told to feed him. I did so, crying the whole time, but strangely, although he must have been hungry as he was still on a very limited food intake, he wouldn’t drink from it! The smell of him, that I must have subconsciously been sensing, was gone and was replaced with a horrible smell of fish and chips. It was on his clothes and skin and breath (he was still being sick a lot), and while the nurses laughed at the fact that this artificial milk made him smell like he’d been eating battered cod for his dinner, for me, he no longer smelt like my baby. I kept pumping my milk, despite the stress taking it’s toll on my supply and knowing that everyone at the hospital, bar my amazing husband, believed it to be a futile activity.
Finally, when the nurse in charge decided to have her first holiday in years (maybe we had made her feel like she needed one, who knows?!), one of the consultants decided to explore reasons other than a dairy intolerance as to why Max still wasn’t improving. After examining the x-rays and discussing his symptoms he decided that Max had a bowel blockage! I couldn’t believe that this was being looked into now, when I had suggested that just under a month ago. Max was transferred to NNU in Southampton by ambulance the next day for a possible bowel operation to extract the blockage.
The first thing they did at Southampton, which is a breast feeding friendly hospital, after his observations and tests, was to ask if I wanted to feed Max myself. I think you can guess my answer! They asked if they could see him breast feeding!!!!!! They watched once, and then I was left to do his next three feeds myself. They said that breast milk was best for him, especially if he could extract it himself at the breast! They congratulated me on continuing to pump, and while they couldn’t criticise the other NICU medically, they said it was a huge decision for a hospital to take feeding away from a mum and baby who so obviously wanted to breast feed and asked me to leave pumped milk for him! Over the course of the next four days, they gave him a blood transfusion of haemoglobin as he was dangerously malnourished and had a very low red blood cell count. The action of breast feeding, plus my milk by NG tube and a simple enema led to the blockage of old poo coming out and he was then referred to as ‘an enthusiastic pooer!’ His mustard yellow, plentiful nappies were a sight for sore eyes and he was transferred back to the original NICU, fit for discharge!
We were cheered by everyone on our return to NICU and I handed over the unopened tin of Neocate to the nurse in charge who commented that Max would still need top-ups as all preemies do once discharged. I didn’t really care if that happened, as long as he was getting my milk too, and spent the next three days rooming in with Max who constantly fed to increase my low milk supply. He was on me solidly for three days and nights, only stopping feeding to sleep on my chest every now and then. Far from questioning that behaviour, as I did with my first, I lapped it up and loved every moment! The staff checked on us regularly and administered his iron and vitamins etc but pretty much left us to it. On day three, they weighed him to discover that he hadn’t lost any weight (they are expected to lose it due to the calorific expenditure in controlling their own body temperature and also from suckling by themselves). He had initially been on the 75th centile at birth but due to large portions of time being nil-by-mouth or on restricted feeds, he was now on the 9th centile and was maintaining this. He had pretty much settled down with feeding and sleeping and we were discharged, exclusively breast feeding!!!
Max continued to gain weight well, at times, reaching the 25th centile but at his cardiology check-up in Southampton, they discovered that the innocent murmur was actually pulmonary stenosis (thickening of the artery from the heart to the lungs) and that blood flow was compromised to his lungs. The stenosis was in an unusual position and so they referred us to a geneticist, because his height had also been dropping down the centiles (it’s now off the bottom of the chart). I won’t go into too many details but the first year of Max’s life was amazing, but also the hardest of times. His dairy intolerance was ruled out as a cause of the bowel blockage at 6 months old and so I reintroduced dairy in my diet and did baby led weaning with him at 8 months old, including dairy, which caused no reaction – he loves his food! We have faced agonising waits to see geneticists where various genetic conditions were suggested, tested for and eventually ruled out.
Max was slow with his gross motor milestones caused by low muscle tone and eventually started seeing physio and speech therapists and orthotics (he has a brace on his right leg to hold it into the correct position). He sees cardiology regularly, although his heart condition has thankfully improved due to a cardiac procedure to widen his pulmonary valve at 11 months old (another time when I was thankful for breastfeeding as the nil-by-mouth before operations doesn’t apply as strictly to breast milk). We are pretty convinced now at 23 months old that Max has a condition called Noonan Syndrome which causes, amongst other things, pulmonary stenosis, short stature and low muscle tone and also polyhydramnios in pregnancy, sometimes leading to prematurity. It also can cause complications with the GI system, such as slow bowel motility and, surprisingly, an inability to tolerate oral feeding until about the age of three, due to severe reflux and a compromised ability to co-ordinate sucking, swallowing and breathing. Because of this, these children are often pronounced failure to thrive and suffer dramatic weight loss because the fats they can digest most easily are in breast milk and the majority cannot breast feed or have been put on formula for various health reasons in hospital. How ironic!
Despite all of this, Max is a gorgeous, happy, delightful little boy, who, along with his brother, is the light of our lives! I think it is unnecessary to say it, but I’m convinced that Max’s good health and weight gain is partly due to breast feeding (especially knowing what I know now about Noonan Syndrome), so thank goodness we persevered through the NICU experience and are still going strong with it at 23 months!!!
You may have possibly unearthed internet facts such as, your child is going to be gay. This is especially if you are bottle feeding. Bottles are unsafe and contain chemicals that mimic female hormones. They tried to make non-gay bottles which became very popular but then they discovered recently that they’re just as gay as the rest. However, the gay-soaked chemical isn’t mutually exclusive to bottles, it’s anything that is plastic. Basically everything you have probably already bought for your child will in some way induce gayness. I’m not entirely sure why this isn’t written on the information sheets provided with every baby item you buy but I have written to the WHO to see if they can shed some light on the subject.
Most helpful of all will be this phrase. You don’t need to memorise it because it’ll be said to you at least four hundred times a day and encompasses every unknown which is pretty much everything in parenting because only the children know the rules and they’ve made a pact to never, ever let on to grown ups.
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