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Mead Johnson Metabolics
Maternal PKU
Your Diet and You
This booklet is intended by Mead Johnson to be provided to you
by your healthcare professional as part of his or her care plan in the
dietary management of PKU. Your healthcare professional is your
primary source of information and advice. Always discuss with
your healthcare professional any information you receive and any
changes that you wish to make. You should seek and follow the
advice of your healthcare professional.
What is Maternal PKU?
Women with Maternal PKU are simply women
with PKU who are also pregnant. If a woman with
PKU is not on a strict low-phenylalanine diet
during pregnancy, her high blood phenylalanine
can cause several harmful effects to the developing
fetus. High phenylalanine levels — much like
alcohol and drugs — are toxic to babies in the
womb. These babies can be born with small heads,
heart defects, or mental retardation. (These
problems have nothing to do with whether or not
the baby will have PKU. This is a separate issue
[See Will My Baby Have PKU? on the back panel]).
That’s why diet in pregnant women with PKU
is so important. Women who keep their blood
phenylalanine between 120 and 360 umol/L
(2 to 6 mg/dL) by following a low-phenylalanine
diet throughout pregnancy have the best chances
of having a healthy baby.
Pregnancy is a time of mixed emotions for
all women, but those with PKU have the added
pressure of following a strict diet. However, with
the support of family and friends and guidance
from a metabolic clinic, you can do it.
What Can I Do to Have a
Healthy Baby?
The number one thing you can do to have a
healthy baby is to take ALL of your Phenyl-Free® 2HP
or Phenyl-Free 2 formula every day. While this may
seem obvious, it cannot be emphasized enough.
There are several reasons why this formula is so
important. One is that Phenyl-Free 2HP or
Phenyl-Free 2 provide protein for you and your
growing baby.
You may be under the impression that you are
on a low-protein diet. You’re not! You’re actually on
a low-phenylalanine diet. Protein is made up of
many amino acids. With PKU, you cannot correctly
metabolize (or break down) just one of those amino
acids called phenylalanine, but all other amino
acids in protein are handled normally. So, what the
Phenyl-Free 2HP or Phenyl-Free 2 formula does
is provide all the amino acids except phenylalanine.
Think of it as custom-made protein for people
with PKU.
Other foods that contain protein (such as meat
and dairy products) also contain phenylalanine.
Phenyl-Free® 2HP or Phenyl-Free 2 is a way you —
and your growing baby — can get enough protein
without too much phenylalanine. This makes for a
healthy mother as well as a healthy, growing baby.
Phenyl-Free 2HP or Phenyl-Free 2 also help keep
your blood phenylalanine levels under control. If the
body does not get enough protein from the diet (in
your case, from Phenyl-Free 2HP or Phenyl-Free 2),
it will break down body muscle to get the protein it
needs. This is called catabolism. When your muscles
are catabolized, amino acids (including phenylalanine)
are released into the bloodstream. This will cause an
increase in your blood phenylalanine, putting the
developing fetus at risk.
Gaining Weight in Pregnancy
Think about it: the incredible process of one tiny
little cell growing into a newborn baby takes a lot of
extra nutrition! It only makes sense that in pregnancy
you’ll need more protein, calories, vitamins, minerals,
and fluid than when you were not pregnant.
You would never think of not feeding your baby
after he or she is born. Well, your baby needs lots
to “eat” before birth, too. That’s why it is vitally
important that you take all your formula and get
enough calories. Just like any other pregnant woman,
you should gain weight in your pregnancy —
approximately 25–35 pounds total. Sometimes this
means eating when you are busy, tired, working, or
even feeling queasy.
Remember:
your baby is
counting on you!
What Should I Eat?
If you are hungry but unsure what to eat, or
find that you are losing weight, contact your PKU
clinic for help. There are many tasty specialty lowprotein or protein-free foods that will help you get
the calories you need. In addition, you can consult
the following list of snacks that are readily available
at the grocery store and are low in phenylalanine:
20
Great Preparation-Free Snacks
for You While Expecting a Baby
1. Dried cranberries
2. Wise® onion rings
3. Juicy Gels® (prepackaged gel snacks)
4. Cherry pie filling with
Cool Whip® topping
5. Italian ice or sorbet
6. Diced pears, peaches, or fruit
cocktail (sold in small
“to go”containers)
7. Durkee® canned fried onions
(a potato chip substitute)
8. Marshmallows
9. Grapes (or any fresh fruit!)
10. Applesauce (try the ones with
raspberry or strawberry added)
11. Plantain chips
12. Canned frosting (right out
of the can to satisfy your sweet
tooth)
13. Dried apple rings
14. Goldfish® or Bugles® snacks
15. Baby carrots (eat right from
the bag)
16. Baked apple (remove core,
add sugar and cinnamon, and
microwave on high for 5
minutes. Serve with Cool Whip®
topping.)
17. Black olives
18. Starburst®, Skittles®, or any other
hard candy (try a Tootsie® Roll Pop®
to satisfy the chocolate urge!)
19. Low-protein ice cream (freeze
flavored non-dairy creamer)
20. Pickles
It Gets Easier as You Go
As your pregnancy continues and you gain
weight, you will actually need more phenylalanine
in your diet. Why? The baby needs phenylalanine
to grow. This means that, as the baby gets bigger,
you will be allowed more foods containing phenylalanine. So, the diet at the end of pregnancy is
much easier than in the beginning. By monitoring
your blood phenylalanine, your metabolic
specialists will know when it is safe and necessary
to add more phenylalanine to your diet.
• Remember that your senses seem sharper
during pregnancy! Sometimes just the smell of
a food cooking or of your formula can make
you feel queasy. Cook in a well-ventilated area
and stay away from foods with strong odors.
• Have someone else prepare your Phenyl-Free 2HP
or Phenyl-Free 2. Drink it at the temperature
that is best for you. (Many women like it very
cold, but others prefer it at room temperature.)
A cup with a lid and straw or a sports bottle will
help cut down on any smell.
What About Morning Sickness?
Morning sickness is that queasy, nauseated
feeling pregnant women sometimes get, especially
in the first trimester. It often occurs in the morning
but can happen at any time. The good news? Not
everyone experiences it, so don’t expect the worst.
And if you do suffer from morning sickness,
following the tips below can help.
Important: If you are unable to consume your
Phenyl-Free® 2HP or Phenyl-Free 2 formula, or
if you cannot eat regularly because of nausea,
contact your metabolic clinic immediately for help.
• Eat small, frequent meals throughout the day.
An empty stomach makes nausea worse!
• Avoid large amounts of fluids with meals.
This may mean drinking your Phenyl-Free 2HP
or Phenyl-Free 2 before or after meals.
• Dry, bland foods seem to help. Try to eat a
low-protein cracker or a regular cracker if
you have enough phenylalanine in your diet.
Plain, low-protein pasta or bread may also
do the trick.
• Listen to your cravings. If a certain food
appeals to you, eat it! (Make sure it is on
your diet first.)
• Go easy on the fried foods. Fat is hard
to digest.
Will My Baby Have PKU?
It’s natural for women with PKU to wonder if
their babies will also have PKU. The answer? The
likelihood is that your baby won’t have PKU,
unless the father is a carrier or has PKU. There is a
carrier test for PKU, but it is not 100% accurate.
If you have questions about genetics or carrier
testing, contact your metabolic clinic.
For ordering information, call 800-BABY123 or
order online at www.store.enfamil.com
LF871 REV 2/07
©2007 Mead Johnson & Company