Your delivery date will be here before you know it, so it’s best to get ready. Here are some tips to manage your PKU during a busy time which brings lots of excitement and change.
1. Stock Up The Freezer
Stocking up the freezer will be invaluable for after your baby has arrived when your time and attention will be more focused on feeding your newborn than yourself.
Pick up some of your supermarket favourites which have phe exchanges suitable for you: vegetable fingers, veggie burgers, vegan sausages, stir-fry packs, dairy free ice-cream etc.
Batch cook a variety of meals, snacks and dessert options so you have plenty of choice. Remember to label with the date it was cooked, dish and number of phe exchanges per portion and number of portions in that pack.
It’s good to accept help. Cooking and preparing meals are a really practical way for others to help. This can either be a big cook-up together or passing your favourite recipes to friends, family or partners for them to cook.
Download our recipe booklet for a selection of recipes which can be cooked in advance and frozen, or quick and easy options to prepare when you have little time to spare.
2. Prepare your PKU prescription
Remember to request a supply of your protein substitute(s) and specially manufactured low protein foods. It is important to organise your cupboards and make sure items with the shortest shelf-life are used first. This will limit wastage.
It might be a good time to update your repeat prescription. Your usage of low protein foods may change after the baby is born e.g. You may have altered your specially manufactured low protein food choice during pregnancy due to taste changes, so it is best to be prepared.
Prepare your hospital bag
It’s never too early to pack your hospital bag. Labour can be unpredictable, so just in case, it's best to plan for a few night's in hospital and consider the PKU supplies you will need.
Top hospital bag items for mums with PKU:
You will need a good supply of:
Snack ideas: permitted biscuits, cereal bars, low protein chocolate, crisps, dried fruit (raisins, apricots, dates, sultanas, cranberries and prunes are all “exchange free” options), sweets, sugary aspartame-free drinks.
See our recipe booklet for recipe options which can be prepared in advance ready to pop in your bag at the last minute.
Consider a hospital bag for Dads and birthing partners
It’s a good idea for your birthing partner to pack a hospital bag of their own before the baby arrives. Your birthing partner will be a better support to you and the baby if they have their own supplies too.
While you will be offered meals and drinks, your birth partner will likely be left to sort out their own refreshments. Having drinks and snacks packed will be invaluable – you wouldn’t want your partner to have to choose between going hungry and leaving the labour ward to hunt for the nearest café or working vending machine.
During your pregnancy you will have lots of discussion with your midwife about feeding your baby. Your midwife will be able to talk through all the options and give you information to help make your choice.
Towards the end of your pregnancy, your dietitian will ask whether you intend to breastfeed and how tightly you would like to manage your phe levels after your baby is born. This is so that your PKU diet and monitoring can be tailored to you.
There are lots of benefits of breastfeeding for all women and their babies, PKU is no different. All women with PKU and hyperphenylalaninemia (hyperphe) are encouraged to breastfeed if they would like to, regardless of their phe level. The slightly higher level of phe in your breast milk will not be a problem for your baby. If your baby’s heel prick result is positive for PKU, a paediatric metabolic dietitian will advise you on feeding your baby.
When women breastfeed, they need more energy, protein and other nutrients. It has been reported that PKU women who breastfeed can tolerate more phe in their diet than before their pregnancy and your dietitian can advise you on this.
First few days…
When your baby arrives PKU will likely be far from your mind. Like all new mums the first few days are important for bonding, feeding, settling and trying to catch some sleep.
You will have worked really hard with your PKU diet during the pregnancy, now it’s time to enjoy the result! Your metabolic team will be delighted to hear about your new arrival when you are ready to share. It is unlikely that regular contact with your metabolic team will be needed straight after your baby is born. However, if you would ever like more support with PKU, your team are always a phone call or email away.
The metabolic team might ask for the routine information about your baby such as their birth date, weight and head circumference. If your phe levels have been high for a period of time during your pregnancy your metabolic team will discuss if an extra check of your baby’s heart or development are recommended. This will be individually arranged with specialist teams.
Newborn screening (the heel-prick test) usually happens on day 5 of life. You might like to remind the person completing the test that you have PKU.
First few days...
With PKU monthly bloodspots are required to keep track of their diet. You might have agreed to send in bloodspots more or less regularly than this with your metabolic team. This discussion and arrangement will be individual to you. When you send in bloodspots in these first few weeks, your team will check in with you, report the result and discuss if any changes to your diet would be recommended.
Your dietitian will call you around 6 weeks’ after your baby is born to check how you are getting on with your PKU diet and if you need any support.
First few months...
When you send in bloodspots, your team will check in with you, report the result and discuss if any changes to your diet would be recommended.
You will be offered a PKU clinic appointment for a check-up with the metabolic team about 12 weeks’ after your baby is born.