Tips for Breastfeeding a Baby with PKU(from members of the PKU Listserv group)
Breastfeeding a baby with PKU can be a satisfying and successful feeding method, in combination with PKU formula. Blood phe levels can be well controlled using breast milk as a natural source of phenylalalnine to augment formula. There are many different approaches that can be successful. It is important for a breastfeeding mother to heed the advice of an experienced PKU clinic, and to find the method that works the best for her, perhaps with a little trial and error in the beginning. Here are some experiences from a professional as well as from mothers who have breastfed their infants with PKU.
óVirginia Schuett, Director, National PKU News
From a Professional:
How to start? I had an article in Acta Pediatrica Vol. 88/December1999/suppl.
432, p.25 Breastfeeding in phenylketonuria. You will here find how to start
diet with serum phe above 1200 umol/l ( 20 mg%) and serum phe less than 1200
umol/l (20 mg%) when the infant is diagnosed. I think the article will be of
good help. Most important is that the baby is fed ad lib and on demand. The
first day or three feed only phe-free formula ad lib, but count the amount.
When time for breastmilk, divide the amount of formula the baby took the day
before in 7-8 or more bottles; give this set amount of formula before each feed
and then let the baby breastfeed on demand. The baby should be given formula
first no matter how many feeds, and then breastfed. By following the serum phe
you reduce the amount of formula and the baby take more from the mother. You
donít need to know the total amount of breastmilk. The first 2 weeks we follow
serum phe 3 times/week and weight check same day then the serum phe usually is
where it should be. Follow up: serum phe once a week. And weight check same
day, length and headcirumference once a month first year. One very important
thing: Ask the mothers to drink a lot, it will help most mothers to have plenty
of milk. My advice is, fill a bottle with at least 11/2 lit of water and drink
between mealtimes (has to be empty by bedtime); fluids at mealtimes are in
One Motherís Problem with Breastfeeding and Helpful
I know it can be difficult to find the right way to breastfeed an infant with PKU, and consequently very frustrating for the mom. Every clinic seems to have a different approach, and of course some have no experience at all and are not very interested in helping a new parent figure it out. I am not sure what your clinic's attitude or experience is, but I have not dealt with a breastfeeding mom for more than 16 years, so I don't feel up on the latest or best approach.
I do know that I was successful with at least half a dozen moms way back when I was in the clinic, some breastfeeding for a year or more but most for about 6 months. The blood phe levels were uniformly very good and I always felt the blood control was completely comparable to the usual approach of PKU formula plus an added source of phe from a source with a known phe content (such as an infant formula or milk).
My method back then was typically to alternate breast feeding with PKU formula feeding, allowing so many minutes at the breast and then following right away with formula at each feeding. I think this is optimal, as the baby then gets formula combined with some phe at each feeding, optimizing protein utilization and synthesis. The time allowance at the breast varied with the breast milk phe content, which we analyzed periodically (it is extremely variable from one woman to the next). We also did blood monitoring weekly for better control and advice to the mom for adding breast milk or adding more formula.
I think it might be helpful to you to speak with other moms who have breastfed relatively recently. I'm sure there are other ideas about how to manage breastfeeding. If you don't already belong to the PKU Listserv group, I suggest this is the place to start. You can simply post a question and hope to get responses from others with experience. It is a very supportive group for all kinds of issues related to PKU so it is good to join in any case.
To join the group, just e-mail Lin Gilbert at firstname.lastname@example.org. There are about 1300 families in the group so surely you will get some responses.
I hope this helps a little.
Virginia Schuett, MS, RD
Director, National PKU News
* I know this is a hard time for you with your new diagnosis and these feeding
issues. I was fortunate not to have too many initial problems with
breastfeeding my daughter, but I did have a few problems down the road with my
daughter not eating as much when she breastfed and she ended up weaning herself
at about 6 months (just refused breast milk all together). Trying to breastfeed
is difficult especially when we must give those bottles of formula that are
critical for our children. Have you tried pumping and giving the breast milk by
bottle? In terms of your son getting the benefits of the breast milk and
getting the bottle he apparently seems to prefer, it is a win-win.
* I know there is some kind of device that you can tape to your breast that his
formula would come through at the same time that he is nursing. He would be
getting formula and breast milk simultaneously. Check with Le Leche League. I
know there is a device you can use to do this. I saw it. I just don't know what
it is called.
* I feel for you! When my son was diagnosed I strongly pushed to be able to
breastfeed (and I HAD to if you know what I mean; pumps just don't work
relieving the pain) the doctor was leery but since there had been a few
successful cases they reluctantly agreed to let me continue. Zack was put on a
VERY strict schedule of feeding every 3 hours day and night (ugh)...it was only
about 10-15 ml of formula, topped off with the breast (which I had to time-not
easy to do at 3 AM) He was allowed to nurse up until 1 hour before the next
scheduled feed if he was still hungry after the first nursing set of about
15-20 min. As he got older of course his formula intake increased. I honestly
cannot remember how many ml we went but I know it was never over 45mL for quite
awhile... (and no-after he was about a month and WANTED to sleep through the
night, I rearranged his daily intake so we could both sleep!)
* I told my PKU doctor I wanted to continue breastfeeding after my daughter, Annaliese, was diagnosed. As the Dr. suggested, she was breastfed every other feeding and her formula feedings were supplemented with my breast milk. At six months she weaned herself, probably because drinking from me required more energy than the bottle. I even weaned her from the bottle to a cup at that time. All went smoothly except that I wanted her to breast feed more. But her needs were more important that my desires.
* I know so well the struggles you are facing. Our son is thirteen weeks old and for the first 10 weeks it was a HUGE struggle. I think my pediatrician thought I was crazy because one day I would call and say that Will refused to drink from the bottle and the next day I would say he ONLY would take the bottle and not breastfeed! Will was fickle at first and I donít think that it has anything to do with NIPPLE CONFUSION or the taste of the formula. I truly believe that Will got what he needed in those first weeks in spite of the drama I felt that I went thru in an attempt to balance his phe intake. His levels stayed within normal range and he is now 17 pounds strong and very happy. He did have reflux issues which are managed with medicine but, barring medical issues, I really think if you hang in there and just keep trying both at each feeding, in whatever order you are possessed to try that time, he will do fine. I now am back at work, so this is how we do it- WHEN I AM HOME...Will gets his phe-containing bottle first and then is breastfed if he is still hungry. If he doesnít want the bottle (like tonight) I just breastfed him to keep him from getting too hungry. He then slept a while, upon waking he was hungrier than usual because I donít have enough milk to be his "primary meal" so he ate a phe bottle happily and then breastfed some. Now we are back on track for the last feeding of the night. WHEN I AM AT WORK...the nanny feeds him the same thing at each meal, which is a combo 1.5oz breastmilk/2.5oz Phenex 1. He doesnít have the choice so he eats that or nothing. If he completely refuses then he must wait for the next feeding and usually eats.. it was a struggle but now is just fine. Hang in there and email me directly if you need advice. It gets better.
* I breastfed my daughter until she was nine months old. What I found was that
I had to use the slower-flowing nipples. I used Avent bottles, and stayed with
the stage 1 nipples for a long time. I know they tell you to switch, but in my
experience, if they get used to not having to suck as hard, then they don't
want to nurse anymore.
* I fed my son breast milk for his whole first year. I also tried nursing but eventually just started using my breast pump and just mixed the breast milk with the formula. I know this ends up defeating some of the advantages of breastfeeding like the convience of always having the breast milk ready and warm, etc. But for me it was better, for I then knew exactly the amount of breast milk he was getting and was able to keep his levels very good. I would pump up a bunch for the freezer for when I needed it, but mostly just tried to get the amount needed to mix with the formula each day. Each day I'd premix all his formula with breast milk and have in the fridge which was convenient. My company had bought the pump for me and it was a really nice dual pump which only took about 10-20 minutes to pump.
* I went through this with our first child (who is now 17 and about to start college!). What I found worked best for both her and I and Dad was to express (pump) the breast milk and freeze it ahead of time, then mix directly with the formula in a bottle. This way there was no "nipple" confusion for Jax, Daddy got to feed her too, and I still got to give her the advantage of mother's milk. I did this for about 6 months before we switched over to mixing Similac or Enfamil with the breast milk. Talk to your nutritionist about the amounts of phe per each, then you can measure appropriately. It also made it extremely easy to correlate blood levels with amounts of formula taken. We recorded how much was left in each bottle and how much we originally used of both breast milk and formula. It was a little more time consuming, but well worth the effort. I think I used to "de-stress" when I sat down to express the milk. It actually helped me to calm down with all the confusion and stress of a new, PKU positive child.
With our second child, now 13, I was able to breastfeed exclusively since he doesnít have PKU, and so enjoyed it that I did it for 2 years, mindful that the next child could have PKU. In fact, he did! Our next son, now 10, was given the same regimen as our daughter. All three are happy, healthy, and active.
* My son is 7 1/2 months old and he went through a period much like you are describing. I don't know why. In fact, I think I may have attributed it to gassiness and/or constipation(he was a VERY gassy newborn). One day he would suck down the bottle and refuse the breast, and the next day it would be the opposite. I remember one day where he didn't eat for approximately 7 hours! He had missed 2 feedings! I tried kind of stuffing my breast into his mouth and that only made it worse - both for me and for him - as he still refused. I called the clinic, and they referred me to my pediatrician (who knows next to nothing about PKU) who didn't have much to say. I was so frustrated as well. One thing my older son taught me with breastfeeding is that he can sense my agitation. So I then just tried playing with him and calming myself down. He did eventually eat.
How much formula do you have to give him? Could he be full from that???
Stick with it, keep offering him food. I now only offer the breast first if my ducts are clogged, just so I know he'll take his Phenex, although I think he would always eat it (he's a very hungry little boy)! Do your best to sing to yourself, relax, keep happy thoughts and don't freeze up when you offer him the breast or the bottle. I know the first couple of times I was offering, I was so tense about what he would do. Try to keep it out of your mind, smile a lot, and he'll get the cues (hopefully!). DON'T GIVE UP!!!! You can do it!
* This has happened with my first daughter who does not have PKU. What I wound up doing was pump (using a good quality double pump like Medela "In Style" for example) at the times when I would normally breastfeed and give breastmilk in a bottle. Yes, the intimacy aspect of breast feeding was lost, but we made up by cuddling, etc. My other daughter, who has PKU, somehow did not reject the breast but I was giving her bottle only 2-3 times a day when she was this young.
Last update: September 2006
National PKU News: www.pkunews.org