Kiki and Nico

Kiki and Nico, nearly a year old

At 20 weeks into her pregnancy, Andrea was told her twin girls were unlikely to survive. Both Kiki and Nico were born prematurely at 30 weeks, Kiki with clubfoot and chronic lung disease. Andrea, who ran the Virgin London Marathon in 2012 for Sparks, tells her story here:

“My husband Paul and I found out we were having twins at 12 weeks and it was scary. We already had two young children, a son Luca and daughter India and were anxious as to how we would cope with four children under the age of four.

When I was 20 weeks pregnant, one of the placentas ruptured and I began losing my amniotic fluid. Doctors told me there was a good chance I would lose one if not both of my babies.Andrea with her twins

“When you are first told you are having twins it’s a shock – but then when you think you might lose them, it’s like your world comes crashing down.”

It was a very tough pregnancy. I had the stress of potentially losing the girls and I was away from my children and family, having to spend two months in hospital constantly bleeding and having regular blood transfusions. I was told I could go home for Christmas but I didn’t make it, as I went into labour on Christmas Eve and both babies were delivered safely, 10 weeks premature, on Christmas day.”

Coming home

“It was a real miracle, but it still wasn’t easy. The way that the twins were positioned potentially was their life saver. Nico lay beneath Kiki who’s placenta had ruptured and may have acted as a plug, preventing her from miscarrying. Kiki was born with a clubfoot and chronic lung disease but we were just so happy to have them both with us.

Kiki in the special care unit with her clubfoot visible

Kiki in the special care unit

Kiki also has a hole in the heart and a heart murmur, but these should repair in time. The fact that she has actually survived is the main thing. Both girls will be monitored closely as they develop.

Nico came home after eight weeks in mid-February. Kiki was eventually allowed home at the end of March after 84 days in the Special Care Baby Unit. We had to keep her on oxygen all the time, moving her from cylinder to cylinder as we moved around the house. She needed a new plaster cast on her leg each week to correct her clubfoot.”

Running the marathon

“I felt so blessed by their survival that I really wanted to give something back. I found out about Sparks and their research into chronic lung disease and clubfoot and I decided to take on the marathon. I didn’t even think about the implications of the training or the fundraising –I simply had to do it.”

Kiki’s treatment

Kiki and Nico with mum and dad

“When Kiki came home she had to have a new plaster cast on her foot every week for seven weeks to slowly move her foot into the right position. The casts went all the way up to her thigh and we had a ritual of quickly bathing her the night before she went to hospital to remove the old one in preparation for her next cast. We have saved her little casts to show her when she’s old enough to understand.

She now has a footbrace, which is a bar that connects two hard boots holding her feet in the correct position and will have to sleep with it on for the next four years. The doctors will give us a similar, non-medical pair of shoes for Nico if she feels left out as the girls grow up. Kiki’s feet are two different sizes and one calf will remain smaller where the muscles haven’t developed properly but she should crawl and walk normally. Her biggest problem will be the chronic lung disease. She really suffers if she gets a cold and we have to be extra careful with her in the winter weather.”

What needs to be done

“Originally we thought that Kiki’s clubfoot was caused by being squashed in the womb with the lack of amniotic fluid. But when we started researching clubfoot, we came across the Sparks website and learnt about the research the charity has funded into the condition and its causes.

Without medical research and knowledge gained in the past, our twins’ treatment could have been completely different. The research and trials carried out before our girls were born means that doctors had the right treatments ready to use, and now our babies can look forward to a near normal life at home with us. We are delighted to help raise funds for more vital research, without which we will never find the treatments that other families and children might need in the future.”

Watch Paul and Andrea tell us about how they thought they might lose the twins.

Find out about our research project looking at understanding the genetic and environmental causes of clubfoot.

Your donations help fund research into rare and complex conditions.