For any mother who plans on breastfeeding a child with PKU I highly recommend she consult a breastfeeding specialist to help her on her journey.
Why am I saying this? Because breastfeeding a baby with PKU can often mean giving limited amounts of breastmilk or giving bottles. It often also means decreasing the amount of breastmilk that might be given in the beginning, and going from unlimited breastfeeding to limited times or amounts to bring down the phe levels.
For this reason, it is important to remember the way the breasts work.....they work on demand and supply. The baby demands the milk and the mother supplies it. It isn’t uncommon with babies who are newly diagnosed with PKU for the medical professionals to tell the mother to immediately stop breastfeeding for x number of days to bring the level down quickly. The problem with this is if the mother isn’t pumping 8-12 times over a 24 hr period (yes this means at night too) then we will often see her setting herself up for failure and not having the ability to make enough milk (especially if this is done in the first few days/weeks when the body is trying to set itself up for a good breastfeeding relationship). We might also see the healthcare team suggesting giving bottles with the metabolic formula and then breastfeeding afterwards. This can also inhibit the bodies ability to fully bring in a milk supply depending on how quickly the baby was diagnosed, and can also cause issues with nipple confusion (I will not be addressing nipple confusion in this blog because that is an entirely different issue).
So, let’s look at what is happening in the mom’s body? Right after she gives birth and the placenta is delivered there is a sudden drop in progesterone and estrogen levels. The body at this time already has a high level of prolactin in it which tells the body to start making milk as the other hormone levels drop. When the baby suckles at the breast it causes the body to increase its prolactin production and levels which tells the body to make more milk. If there is no stimulation at the breast either by a nursing baby or by a breast pump we do not see this increase which means less milk production overall. So this is why we often tell breastfeeding mothers to not supplement with formula during the first few weeks so she can set up a solid milk supply. Of course, with a baby who has PKU this isn’t necessarily possible (some providers will allow the breastfeeding mother to nurse for two weeks to encourage a solid milk supply, and then introduce the metabolic formula, and some will want to cut out breastfeeding all together for several days to bring levels down quickly, and some will just add formula in combination with breastfeeding).
So with all of the possible scenarios it is essential that a new mom with a baby who has PKU be taught how to influence her milk to change over from colostrum to mature milk and how to maintain that supply as the baby’s needs change. Unfortunately, most providers and dietitians have limited training (if any) in breastfeeding. So what we often see is a mom who isn’t taught how to handle this, which in time leads to her experiencing less milk production which leads to the struggle of what to do. When the body isn’t making enough milk we can sometimes see guilt over the diagnosis especially since all of this is happening all at once without any warning. Not only is the mother going through all the hormonal changes in her body, but she is also experiencing some very big life changes of becoming a mom (or becoming a mom to another child). Then there are the changes in what she thought her life would be like and the guilt and fear because her baby has PKU. There might also be guilt over wanting to breastfeed, and now struggling with not being able to make it work as she had planned, and sometimes there are outside influences telling her what she should do which collides with what she planned on doing.
So, what is a mom to do? First and most important.....try hard not to panic. Your baby truly will be okay, and all of this will get easier in time. Secondly, decide on an approach to how you want to breastfeed as there are many options:
- Continue breastfeeding and use a Supplemental Nursing System. This keeps the baby at the breast for every feeding which means the breasts are stimulated continuously. By stimulating the breasts at every feeding in most cases you will not need to pump. Be aware some healthcare providers may fear this method because it can mean not knowing exactly how much breastmilk the baby is taking in, and they may not be familiar with the use of a Supplemental Nursing System (you can read more about this and my journey using it for two of my three daughters with PKU here).
- You can feed your baby a combination of formula from a bottle and feed at the breast. This often entails feeding the baby the low protein formula through a bottle and then putting the baby to the breast. If this method is utilized it is very important to remember that as the baby grows he/she would normally go through growth spurts which means an increased need in the amount of milk. Typically when a baby goes through a growth spurt they will want to nurse very frequently for a day or two. Remember earlier we talked about demand and supply. The more the baby demands the more the body will produce, but when feeding bottles the breasts will not have the same amount of stimulation, so this will mean the mother may need to pump after feeding to make sure she empties the breasts fully to continue to make enough milk. It may also mean pumping more during times of growth spurts to alert her body that she needs to make more milk to accommodate the baby’s going needs.
- Some will decide to pump and combine the pumped breastmilk with formula and feed it all straight from a bottle....again in cases such as this it is important to remember that as the baby grows the mother will need to simulate a growth spurt by pumping more so that her body produces more milk to meet the baby’s growing needs.
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