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Raising Twins with PKU

27/11/2019

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Our Beautiful Twins Enter the World!

My name is Leanne and my partner and I have 2 girls, Olivia & Ruby, who are now 2 years old.
They are our miracle babies because after 17yrs of desperately wanting our own family they arrived into our lives on 11th August 2017. My birth was not easy, but our girls were just perfect.

Twins at a very young age

I had a weeklong stay in hospital due to Olivia being in the newborn intensive care unit (NICU) for a few days. We were also told that Ruby had an irregular heart beat and possibly a murmur. I literally could not stop crying but we were taken straight away for her to have a heart scan. It was confirmed Ruby had a small hole in her heart and would need to be monitored. We were devastated but had to get on with it and couldn’t wait to get our precious babies home. On the day we were discharged we were asked if we wanted the girls to have the heel prick test. I don’t really remember if we were told what this was for as I think I was still in shock after a traumatic birth. I was overjoyed that I had these 2 beautiful bundles and was finally a mummy. Obviously and thankfully we said yes to the heel prick test. The girls had the test and we never thought anything more about it.

PKU Diagnosis

A few days later, my husband received a call and was told something was picked up on the heel prick test called PKU. We were told we would need to be seen by the Metabolic team at the children’s hospital the following day.

On that trip to the hospital I just couldn’t stop crying. We were so worried and just didn’t know what to expect. When we were called into the room with the consultant, we were told “your girls have a condition called PKU, there is no cure”. Coming to terms with Ruby’s heart issues and now this PKU diagnosis, was a lot to get our heads around.

Ruby and Olivia

For the following days, we felt mixed emotions. There was an element of guilt as well, as we felt that if we didn’t carry the PKU gene, our girls would not have the condition. My way of dealing with the diagnosis is by being totally in control of their diets.

Food Glorious Food!

Even though the girls are twins, they are different in a lot of ways. Ruby is a big eater which is a great help whereas Olivia is not fussed about food. If at the end of the day Olivia hasn’t had all her exchanges, I’ve found it’s easy to top them up with some yoghurt.
The weaning stage was positive as the girls enjoyed lots of different vegetables and fruit that they fed themselves. As they are twins, it was great to encourage their independence at this time, as you only have one pair of hands! We bought some lovely bamboo plates that stick to the table and they just loved making a mess with the food. They also enjoyed the fruit purees and they sometimes have that now if they are a bit hungry as they are quick, tasty and exchange free.

As with all toddlers, Ruby and Olivia can be fussy eaters but thankfully they love all fruits especially watermelon, strawberries and blueberries. I cook lots of things using prescription low protein foods, but it nearly always ends up on the floor! They absolutely love the low protein pasta – especially the ones that are animal shaped! For the exchanges we mix in Hipp Organic Veggie Lasagne. This is their favourite meal and will eat this nearly every day if all else fails. To bump up Olivia’s exchanges, I find it helpful to use Free From Animal Shape Pasta instead of the exchange free low protein one. One of their very favourite exchange foods is of course: fries!

For breakfast they will have either low protein bread for toast then some fruit or Go Free Coconut yogurt & fruit.
As with all toddlers, I do find they eat the same things most days but as long as they are eating, and their phe levels are within range I try not to worry. As they get older, I’m sure they will be more adventurous though!

Ruby and Olivia as Toddlers

We often eat similar meals to the girls, especially pasta. However, we do try to vary our meals so that they can begin to learn that their diet is different to ours and they can’t always eat the same things as those around them. We will make sure however, that we don’t make a big deal about their special diets.

Protein Substitutes

In terms of the protein substitutes, it’s a bit of a mixed bag. Olivia takes hers no problem! Ruby on the other hand has a very strong character and will only take her protein substitute when she wants to take it – typical toddler. We have tried all age appropriate protein substitutes for Ruby and it seems that PKU explore10 is the best one for her, but that’s not to say that we don’t sometimes struggle to get her to take it. As a result, we always give Olivia her substitute first to encourage Ruby to do the same. Most of the time though, the only way she will take it is when she is distracted by watching her favourite songs on TV. If she then still refuses to take it, so that she doesn’t pick up on our stress, we take a break and try again later.

Taking the Twin’s Blood Spots

Luckily, Ruby and Olivia are great at taking their bloods, they will normally come to sit on my lap to do this. As soon as I sit down and set it all out, they come straight over holding up their finger. It doesn’t faze them at all. They even try and do it themselves.
At first, I was worried about pricking their skin, but they were so brave, they’ve never cried once! The best thing I found was to stay calm, be assured it doesn’t hurt them and that it must be done. It really does get easier each time.

Raising Awareness and Going ‘Viral’!

I started getting involved with raising funds for the NSPKU because without them I don’t know where we would be! They are always there with advice and support.

I am surprised that you can refuse the heel prick test, I can’t even imagine how our lives would be now if we had said no. When the twins had the heel prick, we had no idea what they were testing for. Lots of people have told me they felt the same.

To raise awareness, we have done radio interviews, local magazine interviews, BBC news and we have even made it in the Daily Mirror and the New York Times. Our story has also been published in Canada & New Zealand!
We are totally gobsmacked by how far our story has gone. We just hope it helps in some way with raising awareness and getting some more support for patients and carers/families.
We are organising a family disco & raffle in March 2020 to raise funds for NSPKU & to increase awareness.

Being proactive around raising awareness for PKU has also really helped me on a personal level. It has taken me until now to truly accept that our girls have this metabolic condition. I feel I need to do all I can to raise awareness and I hope one day we may even find a cure.

PKU explore10 is a food for special medical purpose and should be used under medical supervision.

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