Breastfeeding a Baby with PKU
Terry Grossmayer
New Lenox IL USA
From NEW BEGINNINGS, Vol. 15 No. 5, September-October 1998, p. 153,156
We provide articles from our publications from previous years for reference for our Leaders and members. Readers are cautioned to remember that research and medical information change over time.
Breastfeeding and mothering
go hand in hand, wouldn't you agree? Can you picture yourself having
a baby and not nursing? I sure couldn't. I am an advocate of breastfeeding.
I nursed my first two children well into toddlerhood and enjoyed the
usual benefits of breastfeeding. If you are a nursing mother, you know
the list: a healthy baby, healthy mother, bonding, convenience. The
advantages go on and on and many of us take the experience of breastfeeding
for granted. After my recent experience, I will never take it for granted
again. I now realize breastfeeding is a privilege, a sheer gift.
For most mothers and babies,
breast is best, but in certain cases, the situation is more complicated.
I found myself in a situation like this. Newborn screening revealed
that our baby, Peter, was born with a metabolic disorder known as phenylketonuria
(PKU). People born with this genetic disorder do not produce the enzyme
needed to break down phenylalanine, an essential amino acid. The phenylalanine
builds up in the bloodstream and causes severe mental retardation. By
following a low-protein diet, people with PKU can lead totally normal
lives. For the newborn, this means monitoring the level of phenylalanine
in the blood so that the baby gets just the small amount needed for
growth. A special low-phenylalanine formula is recommended for these
babies. Since human milk is lower in phenylalanine than cow's milk formula,
a mother can continue breastfeeding while supplementing her baby's diet
with the low-phenylalanine formula. I asked the doctor how other mothers
have managed to continue breastfeeding. She said that they often try,
but their milk usually dries up for lack of stimulation. "Well,"
I thought, "that just isn't going to happen to me!"
Finding information about
how to breastfeed a baby with PKU was difficult, but finding support
to do it was not. My husband was a tremendous support for me because
he had already seen what breastfeeding had done for our other children.
My dear friend and my LLL Leader also supported me. Other friends who
had breastfed sent letters and good wishes. When I questioned one wise
friend about how to mother without breastfeeding, she said. "You
are going to put that little face against your breast just as you would
if you were breastfeeding and give him his bottle." Without support
like this. I could never have done it.
I wanted Peter to breastfeed
as much as possible and he did enjoy quite a bit of time at the breast.
The whole key to keeping it going seemed to be to stabilize my production
of milk. This was tricky because the number of daily nursings would
fluctuate based on the results of Peter's weekly blood tests. In the
beginning Peter only nursed twice a day to bring his phenylalanine down
to a safe level. To supplement his breastfeeding, Peter drank his special
formula. Every time I gave Peter a bottle, I pumped my breasts so that
they were adequately stimulated and I could establish a good milk supply.
I found it easiest to give Peter bottles at home. That way I could be
sure to pump to make up for that feeding. I reserved the nursing for
feedings away from home. It's so much easier to travel that way!
After Peter's level was brought
down to a safe point, we were allowed to nurse between six and ten times
a day. As time went on, the number of pumpings per day diminished to
four. This was probably because my milk supply was well established.
During periods of rapid growth, Peter could take quite a lot of my milk
and a smaller amount of formula. When the dietician thought Peter needed
more phenylalanine and asked if I could nurse more, I would respond
with a strong, "Of course!" Most breastfed babies with PKU
are given some supplements with phenylalanine in them: again just enough
for the baby to grow. I was determined that any phenylalanine Peter
got would be from my milk, not from regular formula. This meant that
I had to be extra diligent about pumping so that I would have enough
milk for Peter. Using a hospital-grade automatic electric breast pump
and keeping up with my fluid intake helped me to produce plenty of milk
for Peter. I never had to give him regular formula.
There were times when I would
let Peter continue to nurse after he had "emptied" the breast
(although we know the breast is never really empty because it is always
producing milk). This way, we could enjoy the non-nutritive sucking
that most breastfed babies and their mothers enjoy. Sometimes I would
let Peter nurse immediately after I had pumped. By listening to him
nurse, I could tell whether he was swallowing much milk. Gradually,
I became more confident that these extra nursings were not yielding
much extra milk and therefore were not elevating Peter's levels significantly.
When Peter was about nine
months old, I cut the pumping back to twice a day, morning and night.
What a luxury! When he was a year old, I returned the pump and relied
on the phenomenon of supply and demand. Even at this point, though,
when choosing Peter's foods, I always chose those very low in phenylalanine
so that I could maximize the amount of breast milk he got. After all,
why would I give Peter other foods when I could give him my milk? Why
replace a superior food with an inferior food?
Peter nursed until the ripe
old age of 18 months, when I became pregnant with our fourth child.
Today he is a perfectly happy, well-adjusted, intelligent, three-year-
old boy. I am so grateful for the opportunity to have nursed Peter.
Yes, it was a lot of work, but I wouldn't have done it any other way.
When people ask me if I have breastfed my children, I say, "Yep,
every one of em!"
Last updated Friday, October 13, 2006 by njb.
Page last edited Sun Oct 14 09:30:37 UTC 2007.
