Was consent sought before offering premature babies formula or fortifier in UK NICUs? Results of a facebook survey. March 2018 Kathryn Stagg IBCLC


This survey was designed to find out whether UK families with babies in special care who were born before 34 weeks gestation were asked for consent before their babies were offered cows’ milk based infant formula top ups or cows’ milk based fortifier and whether the risks were discussed. The motivation behind this study was a reply on a Facebook post from a mother who lost one of her premature twins to NEC (Necrotising enterocolitis) after he was given cows’ milk based fortifier without her consent. She is quite certain that the fortifier had something to do with the baby developing this deadly disease, although there is little formal research to this back this up. However, there is quite extensive research into the risks of developing NEC when babies are fed with cows’ milk based infant formula. More studies into the risks of cow’s milk based fortifier are desperately needed to ensure parents can make an informed choice. One study found no significant risk of NEC whereas another found there was an increased risk. Studies are summarised here: https://bestbets.org/bets/bet.php?id=2309

Fortifiers are made from processed cows’ milk protein with added nutritional supplements. It is often offered to premature babies as studies have shown that breast milk alone does not contain enough of the energy, protein, vitamins, minerals and salts needed by rapidly growing premature infants. There seems less risk of fortifier triggering CMPA (Cows’ Milk Protein Allergy) due to the proteins being hydrolysed.

Studies into the effects of infant formula on the development of NEC are summarised in this article from UNICEF: https://www.unicef.org.uk/babyfriendly/news-and-research/baby-friendly-research/infant-health-research/infant-health-research-necrotising-enterocolitis/

Infant formula, also processed cows’ milk, is often offered to babies where the mum is struggling to meet the required amounts of pumped breast milk, or if baby is struggling to gain weight on solely breast milk then high calorie formula can be used to help. A significant association between early neonatal exposure to cow’s milk formula feeding and subsequent development of CMPA/CMPI has been documented.  https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1399-3038.1994.tb00352.x

The survey was an anonymous exploratory study and shared on the “Breastfeeding Twins and Triplets UK” Facebook group and the “Parents of Preemies UK” Facebook groups. Those who took part were free to choose to participate and were aware anonymous quotes may be used. 191 parents responded, 131 had singletons, 54 had twins, 6 had triplets, so that equals 257 babies in total.

Gestation in weeks                            

<25+9 9% 17
26+0 – 27+6 19% 36
28+0 – 29+6 24% 44
30+0 – 31+6 19% 37
32+0 – 33+6 30% 57

During their time in NICU these babies were given the following:

Donor milk 23% 43
Fortifier 64% 123
Formula 52% 99
Just breast milk 19%           36

This is how the rate of supplementation varied for different gestation babies.

(gestation in wks) <25+9 26+0 – 27+6 28+0 – 29+6 30+0 – 31+6 32+0 – 33+6
Donor milk 29% 22% 25% 35% 11%
Fortifier 94% 86% 82% 57% 32%
Formula 35% 50% 36% 49% 72%

Before your baby/ies were given formula or fortifier was consent sought and were risks explained?

No consent sought 31% 58
Consent sought/no risks discussed 44% 81
Consent sought/few risks discussed 15% 27
Consent sought/full risks discussed 10% 19

Was donor milk discussed and consent sought?

Not offered 68% 126
discussed/no consent 3% 6
discussed/consent 29% 54

As this survey covered from very early babies up to 34 week gestation one would imagine that the majority of time donor milk was not offered was for the later babies. However on further analysis, 50% of the babies less than 26 weeks, nearly 65% of babies between 26 and 28 weeks and over 60% of babies around 60% of 28-32 week babies were not offered access to donor milk.

I was also interested by the difference in numbers where consent was sought between formula/fortifier and donor milk. Perhaps donor milk is deemed far more risky than formula and fortifier? In reality, I am not sure this is the case.

Here are some quotes from the survey:

I was very clear that I wanted to breastfeed only but they asked me to consent to formula in case it was needed before I managed to harvest colostrum. No discussion about the risks of formula or the importance of breast milk. If I hadn’t been aware already I might not have understood the benefits of breast milk for premature babies.

Both my babies were prem. I had to fight to give my son my milk. They gave him formula without my consent. With my daughter I actually had a NICU nurse tell me that I would fail at breastfeeding and shouldn’t even bother trying! It broke my heart.

I felt pressured into giving fortifier by the dietitian even though the nurses informed me that they didn’t like to give it to babies, none of them would give me enough info as to why as they didn’t want to be seen as disagreeing with another member of staff (the dietitian) All my boys now have CMPA and I’m wondering if there’s a link.

I wish more units allowed donor milk – it’s so important.

When I had my 26 weeker I expressed for a while and one day I came in and my milk was getting something put in and all I was told it was fortifier he needed it and that was it.

Twin one was given formula on day one as nurses said he needed feeding, went on to solely breastmilk about day three then on to fortified breast milk shortly after. Twin two was given breast milk until he was on full feeds then given fortifier on day 9. Day 10 twin 2 became very ill with NEC and died within hours.

Was NEC (Necrotising enterocolitis) discussed with you?

Yes 30% 57
No 70% 132

NEC was only discussed with 30% of the families. Again maybe this low figure was due to the older age range, but on further analysis NEC was discussed only with between 30-40% of parents with babies born in the higher risk zones of 26-32 weeks gestation, rising to 50% of families with babies of less than 26 weeks gestation. 

Conclusion:

Although the risks of fortifier are still unclear, consent should always be sought and use discussed before babies are given it. The risks of giving formula are much more apparent; increased risk of NEC and development of CMPA and yet still it seems that consent is not always sought before it is given to babies. For 31% of the babies on this survey, consent was not sought. This needs to change. 

Establishing milk supply with a pump

There are several reasons milk supply may have to be established by expressing and not by directly breastfeeding. Mother and baby may have to be separated after birth due to prematurity or illness, or maybe baby just cannot latch on for some reason. Maybe baby is tongue tied, has a cleft palate or is too sleepy to feed effectively.

So how does a new mum start to establish a milk supply if she is not directly feeding her baby?

After birth you should be encouraged to hand express colostrum within an hour of birth if possible, or at least within the first 6 hours. Ask to be shown the technique by your midwife, or there are plenty of great video tutorials online. This one from Global Health Media is particularly good, click here. It is important to massage the whole breast and the nipple for a couple of minutes before starting. Hand expressing is recommended for the first two to three days until the milk begins to come in as colostrum is very thick and sticky and is in small quantities, so will get lost in a pump. However, if large quantities of colostrum are being expressed, you could move onto the pump earlier. Also there are settings on some hospital pumps designed for expressing colostrum and some mums respond better to this. The pump can also be used just for stimulation.

Babies only need a small quantity of colostrum, so every drop counts. These small drops can be sucked up with a syringe direct from the nipple or dripped into a small cup and then sucked into a syringe. This can then be given directly to the baby. You should be encouraged to hand express 8 to 10 times in 24 hours to mimic the baby’s feeding patterns. This will give enough colostrum to feed and to prime the lactation sites so that you will have the greatest chance to make a full supply or as near as possible. Some mums do struggle to express any colostrum in the first few days. It does not mean it’s not in the breast, we all start making colostrum in the second trimester of pregnancy, but it can be a bit challenging to get it out. If it is proving difficult then maybe ask about donor breast milk until your milk “comes in”. Most mums find they can express mature breast milk much more easily.

 

 

lilli put pumping

Moving on to the pump. Milk begins to “come in” around 3 to 5 days after birth, a process called “lactogenesis II”. It is triggered by the birth of the placenta and will happen whether a mum is breastfeeding, pumping or doing neither. Breast milk gradually changes from colostrum to mature milk over a number of days and volumes should begin to increase. Continuing to pump 8 to 10 times a day will help ensure you establish a full supply.

Top tips to establish a good supply!

Frequency – There really is no better way to get a full supply than to pump frequently; 8 to 10 times a day to begin with is essential. Some mums with large storage capacities may be able to drop a couple of sessions and continue to make enough milk, but for many frequency is the key. Expressing sessions do not need to be equally spaced. And if you miss one for some reason, try to shuffle up the others so you still get the same number over 24 hours.

Efficiency – Using a hospital grade pump is recommended. In hospital the staff should be able to provide one for you to use, normally in the pumping room, sometimes by baby’s cot or incubator. Once discharged, hospital grade pumps can be hired either direct from the manufacturer or from a local pump agent. If baby is in NICU there is often a discount code.

Breast shell size – It is really important to get the pump’s breast shell size correct. This will mean pumping should be comfortable and not cause any damage to the nipples, and it will also help maximise milk production. Just a note to say sometimes a pair of breasts need two different sized shells! And sometimes you need to change size as you go through your pumping journey as breast size changes. Nipple diameter is the key. Check your manufacturer’s information on this and experiment a bit.

Power pumping – This mimics a baby’s natural cluster feeding pattern and can help stimulate milk production. The pattern is as follows using a double pump: pump for 20 minutes, have a 10 minute rest, pump for 10 minutes, rest for 10 minutes and then pump for a further 10 minutes. This can be done once a day to help boost supply. If you are using a single pump then you can power pump by pumping 10 minutes on the left and then 10 minutes on the right, rest 5 minutes, pump 10 minutes on the left and 10 minutes on the right, rest for 5 minutes and then pump ten minutes on the left and 10 minutes on the right again.

 

power pumping

Hands on pumping technique – This is a technique which incorporates massage, hand expressing and pumping all at the same time. Many have found that this can greatly increase output. For a more detailed explanation watch this video

Hand expressing – after the flow has slowed you could try finishing off by doing some hand expressing. Often a little more can be squeezed out by hand

A hands free pumping bra – This can make the above massage much easier, as you use the bra to hold the pump onto the breasts and so hands are free. It also means you can pump and do other things at the same time. This can be essential, especially if you have older children. You can buy them or make your own by cutting vertical slots in an old bra or sports bra where your nipples are, and you can insert the cones through the slits.

Warmth – Applying a warm compress just before you express can help the let-down reflex.

Skin to skin with baby – Skin to skin, or kangaroo care as it is often referred to, helps boost oxytocin and encourages the milk to flow. Oxytocin is one of the key hormones involved in the production of breast milk and, amongst other things, stimulates the let-down reflex, meaning milk flows more easily when pumping.

Look at baby – Photos, videos, pictures, pumping next to the cot, listening to your baby. All these remind the breasts what they are supposed to be doing! They also stimulate oxytocin and help with supply.

Latch baby – If baby is beginning to latch on to the breast, pumping straight afterwards can make it much easier for the milk to flow as the baby will have stimulated the let-down reflex.

Distraction – “A watched pot never boils”. It’s the same with pumping. If you watch what you get, you will likely not get so much. Distracting with listening to music, relaxation recordings, mindfulness, watching comedy, chatting to other mums or friends and family all have been shown to increase milk production. Stress can inhibit the let down reflex so these techniques can help keep you relaxed.

Eat and drink – Good for health and energy of the mother, not necessarily for milk production.

Rest – It is really essential for mums to rest. Yes we also want them to wake once or twice a night to pump, but getting a good amount of sleep is so important to cope with the stresses and strains that you feel when a baby who is latching. Get help with all the usual household chores, looking after older children and cooking. Mother the mother so the mother is able to mother the baby.

Galactagogues – There are many foods or medications out there which either have some scientific evidence behind them or have anecdotal evidence that they can increases milk production. However, none of these work unless the milk is being removed frequently from the breast. They are not a magic wand. For more info on galactagogues have a look at this link
pump Sophie De Sousa expressed stash

It is important to look at 24 hour output, not necessarily what is expressed in each session. This is because there is often a wide variation in amounts from different times of day, and also each breast often gives a different amount. Over the first few weeks, we hope to see a gradual increase in volume in each 24 hour period.

Once babies are strong enough or well enough they should be able to move gradually on to breastfeeding directly. Make sure you seek some support from a trained breastfeeding specialist to help you achieve this.

Kathryn Stagg IBCLC 2018