I was diagnosed with PKU a few days after birth in England and was immediately put on a low protein diet. I was monitored by the Royal Manchester Children's Hospital until I was taken off the diet at 16 years of age when my family immigrated to Australia.

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Jeanne and bump!

My progress was subsequently followed by Dr Des Gurry, who stressed the importance of planning a pregnancy and controlling the Phe levels PRIOR to pregnancy. In 1998, in keeping with these instructions, my husband, Russell, and I contacted Anne Rae, the Dietitian at King Edward Memorial Hospital for Women and arranged a meeting to talk about what was required. The diet here in Australia is run slightly differently from that in the UK. I also had a pre-conception appointment with Dr Walters (the PKU specialist during pregnancy at KEMH).

Russell and I set about following the diet. Russell quickly learnt how to manage the diet, which was a great help as it meant that I did not have to cook every meal. He also experimented and came up with some great meals including a pasta sauce that looked like a Bolognese. One thing we found very useful was the use of a "mini book". I bought a small address book in which I wrote the unit values and g/unit of the foods we ate more often. It made it very easy and quick to find the foods without flicking through the large green folder. It was also a convenient size to take with us when we went out or away.

The foods I tended to eat most were salads and chips, cup a soups, pasta (Lo Pro of course!) and veggies. My Phe levels, although a little erratic initially but still in the safe range, were great throughout the pregnancy and I was very lucky not to have suffered any morning sickness. My pregnancy was basically managed by the dietitians Anne Rae & Wendy Baker and my Obstetrician at KEMH.

At 12 weeks, my Obstetrician, Dr Roberman organized my first ultrasound and, on the 6th December 1999 (yes, I still remember the date!) Russell and I had a huge shock - not one baby but two!! I was told that this could help to explain my levels and that my energy requirement would be greater than for a single pregnancy. Once I started adding Polyjoule to my Maxamum, my levels became steadier. Just after the 3-month mark, my levels started to decrease and so the daily allowance of units started to increase (Yippee!). By the end of the pregnancy I was on 130 units.

I was told that term for a twin pregnancy was 38 weeks and therefore at 39 weeks, Dr Roberman decided it would be good idea to bring me into KEMH and to induce labour. Although Jack was well down, we think Christyna might have been hanging on to his legs or the weather was too cold!!!

I was very pleased to have been able to have Jack & Christyna naturally, albeit with the assistance of suction. They were very healthy sizes - Jack weighed in at 6lb 15oz and Christyna at 6lb 2oz. To this day, I still believe that the diet played a huge part in the excellent health of Jack & Christyna. I had not had anything to eat since I was induced, 30 hours previously. The midwives brought me a salad and some toast with vegemite on it. Toast and Vegemite had never tasted so good as it did that night!!

Russell and I recently decided to try for another baby and so I am back on the 20 units per day. I fell pregnant again in May but unfortunately, this one was not to be and I miscarried in early July. I was pretty miserable for a little while but I have bounced back and we are trying again. It just was not to be and it was better to have happened then rather than later on.

My advice for anyone considering a family is stick to the diet and have your levels under control BEFORE you fall pregnant - it may be hard to start with but the effort is certainly rewarded. Research has shown that the earlier dietary control is achieved, the better the end result.

Jack & Christyna are now 2 years old and full of mischief. Both of them are very bright - already they are able to count to 10 and recognize the numbers and also recognize most of the letters in the alphabet.

For those people in Western Australia, the staff at KEMH are absolutely wonderful. I can never speak highly enough of them. The dietitians are there every step of the way for you and so are the specialists.

Jeanne Vernon (31 years)
Adult PKU & National Maternal PKU Representative, MDDA
Perth, WA