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Feeding your baby breastmilk

Transitioning to feeding at the breast

Once your NICU, surgical and SALT teams are happy that your baby has recovered sufficiently from their corrective surgery and is tolerating tube feeds of your breastmilk well, if you would like to progress to feeding at the breast this is something that you may now be able to begin working towards.

It is important to note that transitioning to breastfeeding for OA/TOF parents and babies is not a “one-size fits all approach” and can be challenging. Every OA/TOF baby’s prognosis differs and the support that they will require to be able to breastfeed, and length of time that it will take for them to get there, will be unique to them.

At this point in your baby’s feeding journey, it could be helpful to talk to the hospital breastfeeding support team to get some guidance about you and your baby’s individualised pathway to breastfeeding and what steps this might include. They will also be able to talk to you about the correct positioning and attachment technique or alternatively this helpful guide and video has been produced by the NHS.

Skin-to-skin contact and transitioning to breastfeeding

Skin-to-skin contact is a great place to begin the transition to feeding at the breast as it not only possesses a number of important benefits as discussed above, but also stimulates your baby’s digestion and interest in feeding, encouraging pre-feeding behaviours such as rooting, nuzzling, smelling and licking.

You should try to have as much skin-to-skin contact with your baby as possible if you are wishing to progress to feeding at the breast, so that your breasts become a familiar environment to them. This familiarisation process is important and can take some time – it can require more than one session of skin-to-skin contact for your baby to want to attach to your breast and begin to try to feed. It is important not to rush this process and to remain patient and confident that you and your baby will be able to breastfeed, even if they don’t get it straight away.

Remember – your baby has never done this before and even if you do have experience of breastfeeding an older sibling, every baby’s feeding journey is very different so it can take some practice for you both.

Feeding cues

When initiating breastfeeding, it is important that your baby is ready to feed and is hungry, otherwise they will make little effort to latch and suckle when held to the breast (and instead will probably just curl up and go to sleep on you!). This can be tricky as it is likely that your baby is continuing to be tube fed regularly (usually every 3 hours) whilst breastfeeding is being initiated. You will know if your baby is hungry by reading their feeding cues, which you will learn as you both spend more time together, and you should attempt to get your baby to latch if they show these even if they are not due a feed according to their schedule.

These signs may include:

  • Stirring
  • Mouth wide open
  • Sucking their fingers
  • Fists in their mouths
  • Crying (a late sign of hunger)

(Just One Norfolk, 2024)

If your baby is showing little interest in attempting to latch or suckle whilst having skin to skin, and is not showing any feeding cues, it may be that they are not hungry or that they are very tired from practising feeding at the breast as well as recovering from their procedures.

TIP – when your baby’s next tube feed is due, before it is given, gently wake them, strip off their clothes, talk to them and perform their daily cares (changing nappy etc) to rouse them. This will help them to be awake enough and ready to breastfeed, instead of remaining warm, sleepy and uninterested. You can then attempt to breastfeed them. You could also discuss slightly lengthening the amount of time between your baby’s tube feeds with your NICU team so that they are a little hungrier when they are put to the breast.

Tube feeds whilst establishing breastfeeding

Early on, your NICU and SALT teams may suggest that your baby then has their tube feed of your EBM whilst they are having skin-to-skin contact and attempting to latch to your breast, so that they begin to associate the feeling of filling their tummy with breastfeeding. In this case, it will be important for you to express beforehand to “empty” your breast so that if your baby does manage to latch successfully, they don’t become overwhelmed by having too much milk. This could lead to a negative experience for them which could delay successful breastfeeding. It should however be noted that there is no such thing as a completely “empty breast”, your baby will continue to get small amounts and little tastes of milk when latched so you should just try to express as much as possible.

Signs your baby is feeding effectively

As you and your baby continue to practice breastfeeding together, your team will continually assess how effective this is. Emphasis will be placed on the quality of a feed rather than the quantity of a feed, as it will take time for your baby’s oral skills and strength to gradually develop to a point where they can exclusively breastfeed (Thompson et al., 2019). If you are both progressing well, your team will begin to reduce the amount that your baby receives via their tube and you can begin to reduce the amount that you express before each feed until your baby is exclusively breastfeeding from you. It can take a little time to strike the right balance here so it will be important for you and the team to continually assess the signs that your baby is feeding effectively at the breast and to remain patient, as, unlike bottles, there is no way of gauging exactly how much they have taken during each feed. Signs your baby is breastfeeding effectively include:

  • Your baby is having wet and dirty nappies – roughly 6-8 heavy wet nappies every 24 hours when your baby is small is usually expected and is a great sign that they are hydrated. Any less than this may be an indication that your baby isn’t getting enough milk and could be dehydrated.
  • Your baby is calm and content during and after feeds – this is a sign that your baby is satisfied that they are getting enough milk and that their tummy is nice and full after they’ve fed. If your baby seems agitated, frustrated or upset each time they feed it may be because they are not managing to get enough milk.
  • The length of time that your baby feeds for – although there is no “right” amount of time and every baby will feed for different durations, your baby may only be able to manage short amounts in the beginning, perhaps just 1 or 2 minutes, as it can be very tiring for them while they are small and can take some practice to coordinate their breathing and new-found swallowing ability, particularly if they also have associated tracheomalacia. Each NICU will have a different policy to guide them, but if your baby can only manage a few minutes to start with, a top-up feed via their tube may be suggested. TIP – take a note of the time you begin feeding during the early days so that you can accurately calculate how long your baby has fed for instead of trying to guess. This will enable your NICU team to accurately calculate the amount of top-up feed required, if any.
  • Feeding does not hurt – this is a sign that your baby has a good latch to your nipple and is therefore feeding effectively. If you have nipple pain, speak to your midwife, breastfeeding support team or health visitor as soon as possible so that they can help you with the correct positioning and attachment techniques and prevent any nipple trauma. Pain can interfere with your goal of breastfeeding your baby so it is important to address it as soon as possible.
  • Your breasts feel “emptier” or softer after each feed – this is an indication that your baby is effectively removing milk from your breast. However, if your breasts don’t feel emptied, and are instead hard, painful, swollen after feeds or become engorged, it may be a sign that your baby isn’t managing to remove enough milk. It is important to speak to your midwife or breastfeeding support team if you do experience any of these symptoms in order to prevent it worsening and leading to mastitis. More information about this can also be found here.
  • Your baby is gaining weight – this is a sign that your baby is receiving enough milk and nutrients they need to grow. If your baby loses weight this could be a sign that they are not getting enough milk when they feed and you may be referred to a dietitian. However, they would not be expected to put on weight quickly as they will be using a lot of calories to recover from their procedures and it should also be noted that it is normal for newborn babies to lose a little weight in the first few days after birth, as they adapt to life outside the womb and to feeding orally. Try not to be disheartened if your baby’s weight gain is slow, it is normal for babies’ weight to fluctuate as they grow and your NICU team or health visitor will be monitoring this regularly.
  • What you can see and hear when your baby feeds – when a baby is feeding effectively, you should be able to see that their cheeks are round and that they are periodically swallowing, and you should also be able to hear them suckling and swallowing quietly. It can be normal for OA/TOF babies to make some noises when feeding, especially if they also have associated tracheomalacia and/or a TAT in situ (as this can take up a lot of space in their oesophagus), so it will be important to establish if what you can hear is a cause for concern or not with the help of your surgical, NICU and SALT teams.

If you have concerns about any of the above, talk to your midwife, NICU, SALT or breastfeeding support team as soon as possible. It may be that a few simple adjustments that they can suggest might make a lot of difference.

Potential issues when breastfeeding your OA/TOF baby: Things to watch out for!

If your baby’s feeding and swallowing sounds change or you notice them becoming worse, and are accompanied by your baby displaying any of the following symptoms, it may be a sign that there is an issue such as a stricture or dysmotility, or a difficulty co-ordinating swallowing. In any of these cases you should contact your baby’s surgical or NICU team as soon as possible:

  • Swallowing which is very noisy, “raspy” or “wet”
  • Swallowing which is very slow
  • Coughing when feeding
  • Baby visibly struggling or stressed – eyes wide, fingers splayed, back arching, appears in pain
  • Disengaging from the breast
  • Crying
  • Laboured, noisy breathing/gasping
  • Change in heartrate/oxygen saturations if on a monitor
  • Loss of tone
  • Colour changes to face, lips, nose or finger tips

A stricture, also known as an “anastomostic stricture”, is a narrowing of the oesophagus at the point where it was joined (anastomosis) as it heals and are a common feature of OA/TOF following repair. If your baby experiences any of the above symptoms, along with slower feeding, not finishing feeds, taking longer than normal to feed or not finishing feeds when they normally would, it may be an indication that milk is struggling to get past the stricture and is “pooling” behind it.

  • Mild stricture – your baby may experience some of the above symptoms for a few seconds and then find that it eases with a short break from feeding and being held upright, allowing the milk to move past the stricture. This may happen more at the start of a breastfeed, especially if you have a fast “let-down reflex”, which could overwhelm your baby with milk. This may then ease as the reflex subsides and the flow of milk begins to slow, allowing your baby to cope with the volume that they need to swallow. They may then be content to carry on with the feed without further issues.
    • You should let your NICU team know about these symptoms or, if at home, contact your surgical team and describe what has happened as best as you can and they will be able to advise you further. They may suggest that your baby is admitted for a procedure called an oesophageal dilatation.
  • Severe stricture – if your baby struggles throughout the whole of a feed, experiencing symptoms after very few suckles or chokes and brings milk back up, it may mean that little or no milk is able to move past the stricture which will have now become very tight and therefore requires urgent medical attention.
    • Stop the feed and do not give your baby anymore in case they choke
    • Tell your NICU/surgical team team straight away or attend A&E if you are at home and it is safe to do so
    • If your baby goes blue or stops breathing, seek emergency help immediately

If your baby develops a stricture, it does not mean that you have to stop breastfeeding them in the long run. You may however have to temporarily express breastmilk to maintain your breastmilk supply and prevent engorgement or mastitis whilst your baby’s stricture is addressed.

Note – these symptoms can also be exacerbated if your baby has a TAT/feeding tube in situ as this will be taking up a significant amount of space in your baby’s oesophagus. The tube will however offer a safe, temporary, alternative means of feeding your baby until their stricture has been addressed. TIP – it may be useful to learn how to safely feed your baby via their TAT if they are going to be discharged with it in situ, so that you can feed them using it should the need arise.

Dysmotility in OA/TOF babies is a result of poor nerve supply to the oesophagus below the repair site, and thus peristalsis, the wave-like motion of the oesophagus muscles tightening and relaxing when we swallow, is usually absent in the lower oesophagus below the repair (Loma Linda University Health, 2024). This means that food and fluids do not pass easily. For babies with dysmotility who breastfeed, swallowing can be slow and a feed can take much longer than normally expected. You may notice that your baby’s swallowing becomes progressively slower, that the duration of feeds takes an increasingly longer amount of time and that they begin to display some or all of the symptoms outlined above over time. Your SALT team will be able to guide you if you have any concerns about dysmotility. Ask your surgeon or NICU team for a referral if you would like a SALT assessment. If you have been discharged from hospital and do not have a SALT team, an online self-referral service may be available in your area, or your midwife, health visitor or GP may be able to refer you.

There are several ways in which you can help your baby to cope with their dysmotility when breastfeeding, including:

  • Offering shorter and more frequent feeds (if your baby is agreeable), so that they don’t become too tired when feeding
  • Ensuring your baby is in an optimal upright breastfeeding position, with their head and neck slightly extended
  • Ensuring that your breasts are not too full before commencing a feed as a large volume of milk, particularly if you have a fast let down reflex, may be even more difficult for your baby to swallow
  • Take your time, do not rush a feed and try to ensure there aren’t too many distractions for you and your baby so that you can both concentrate on feeding effectively. Being somewhere quiet so that you can hear their swallowing sounds can also be helpful

Tracheomalacia and breastfeeding

Tracheomalacia affects almost all babies diagnosed with OA/TOF to some degree (Baxter et al., 2018), and is defined as the collapse of the airway when breathing due to the malformation of the rings of cartilage in the trachea, at the point of the tracheo-oesophageal fistula (TOF) (Boston Children’s Hospital, 2024).

Babies with tracheomalacia who breastfeed may struggle to coordinate their “suck, swallow, breathe” activity when feeding, causing them to work harder when they are at the breast which can be very tiring, especially in the early days. You may notice that your baby takes frequent pauses when feeding in order to breathe, has noisy breathing (also known as stridor) as they feed, and comes off the breast in order to catch their breath (Johnson, 2024).

If your baby has tracheomalacia, you can still breastfeed, but you should assess the signs that your baby is feeding effectively (as outlined above), and talk to your surgical, NICU, SALT teams or GP if you are concerned, so that your baby can be assessed and managed appropriately.

There are several ways in which you can also help your baby to cope with their tracheomalacia symptoms when breastfeeding, including:

  • Offering shorter and more frequent feeds (if your baby is agreeable), so that they don’t become too tired when feeding
  • Ensuring your baby is in an optimal breastfeeding position, with their head and neck slightly extended, and that their nostrils are not covered by your breast tissue
  • Ensuring that your breasts are not too full before commencing a feed as a large volume of milk, particularly if you have a fast let down reflex, may overwhelm your baby further
  • Take your time, do not rush a feed and try to ensure there aren’t too many distractions for you and your baby so that you can both concentrate on feeding effectively. Being somewhere quiet so that you can hear the presence and/or degree of any stridor can also be helpful

Your baby’s NICU team or health visitor will closely monitor your baby’s weight gain to ascertain if their tracheomalacia symptoms when feeding are affecting their growth. If any of your baby’s symptoms or their growth are of concern, the surgical team should be informed so that they can assess your baby, and involve other healthcare professionals as needed.

It should also be noted that the symptoms of tracheomalacia when feeding may become worse if your baby has a cold. In this case it will be important to closely assess the signs that your baby is feeding effectively, as outlined above, and seek further advice if concerned.

Responsive feeding

Responsive feeding, also known as “feeding on demand” and “baby-led” feeding, is instinctively feeding your baby when they are hungry or when you want to instead of following timings or a schedule. When you begin establishing breastfeeding with your baby, it will be important to move away from feeding at set times, as will have been the case whilst they were tube fed in the early days, and begin reading their feeding cues to know when they are hungry. Responsive feeding not only allows your baby to feed little and often in order to fulfil their nutritional needs, but also supports a milk supply which is in-sync with your baby’s appetite (UNICEF, 2016). It is important to note that you cannot overfeed or “spoil” your baby by breastfeeding them as often as they want to and that feeding responsively is a significant source of love, comfort and reassurance for you both (UNICEF, 2016).

Advice for partners

Your partner may have been involved in feeding EBM to your baby when they were tube fed in the beginning, and you might both now be wondering how they can remain as involved as you transition to breastfeeding. There are in fact lots of helpful ways in which your partner can support you and your baby with breastfeeding, including:

  • Conducting your baby’s daily cares, such as changing their nappy and bathing them, just before they breastfeed – this allows time for your partner to continue to build a bond with your baby and gives you a little time for yourself
  • Ensure your privacy needs are met whilst breastfeeding – this is especially important whilst your baby is in hospital and can involve drawing curtains and blinds, putting up signs, keeping you both covered if that’s what you’d prefer and ensuring you are not disturbed
  • Provide you with emotional support – praise and encouragement can help you to feel more confident with breastfeeding and motivated to continue
  • Providing practical help – making sure you are both comfortable and that you have a drink and snacks to keep you well nourished, being on hand to get you things you may need and entertaining your older children if you have them
  • Seeing to administration – such as paternity/compassionate leave, organising hospital parking and hospital meals etc.
  • Safeguarding yours and your baby’s time together and ensuring you’re not overwhelmed with visitors, especially in the early days