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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:
(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:
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:
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.
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:
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:
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:
