By Roza Sousa Freitas
Our journey started just over 4 years ago, a journey that in the beginning felt like it would have no end. With having a healthy pregnancy our big day arrived to welcome our biggest blessing into the world. Well, to our biggest surprise our little Lilliana came with one of the biggest surprises, something that has changed our lives.
Lilliana was born the 2 July 2014 at 08h20, weighing 3.29kg, a beautiful bush of hair all 10 fingers and toes and what looked like a completely healthy newborn baby.
To our shock, after having Lilliana turn a slight blue in colour, the nurse came in asking if I saw that my child had a hole in her mouth. The first thing we did was ask Google… And well, it was the first time that I had ever heard about or even seen a cleft.
That evening Lilliana’s paediatrician arrived and immediately admitted her into NICU. For non-medical terms the NICU is where all premature babies, or babies that are born with a condition of some sort, go to. Well, here I was a new mother not knowing much about any of this and facing what felt like a one huge mountain to climb.
48hrs after Lilliana’s birth we received the diagnoses: 'Pierre Robin Sequence.' Not only were we dealt with a cleft palate but we were handed a rare disease and something that not many knew of or how to deal with. So we were left to research and to try and find out as much as possible. Most of you reading this are probably wondering what Pierre Robin Sequence is.
PRS is a rare disease. It consists of a number of abnormalities affecting the head, face, smaller than normal jaw, an enlarged tongue that is placed further back than normal which in turn obstructs a very narrow airway and cleft.
At 4 years old Lilliana has had to endure more surgeries than most adults. Her very first surgery was at 11 days old called a glossopexy (pulling her tongue forward to help open up her airway), after 2 days later Lilliana managed to pull her stiches loose.
At 24 days old her next surgery was scheduled and that was a Mic-Key because Lilliana was struggling to feed.
After 30 long days we were finally discharged and sent home with feeding lines, and an oxygen machine. All this had quickly become our “normal’’. Times were tough and yes it was difficult to accept but we managed and survived it. Lilliana’s soft palate repair was scheduled for the 18th February 2015. The operation was successful.
I could carry on with Lilliana’s story for days, if not years and literally write a novel but this is not my intention. I want each and every single one of you reading this to know that yes, things may seem tough, and yes things may seem difficult - but if there are words that I can leave you with, they would be:
Never lose HEART, Never lose HOPE, Never lose FAITH, Never ever GIVE UP.
All this does eventually get easier and even in the darkest of times never forget that. Whatever challenges you are facing, big or small, you can do it.
Roza Sousa Freitas is married to her husband, Ruben, and they have their beautiful daughter, Lilliana who is now five years old. They live in Bloemfontein, South Africa.
If your baby is also diagnosed with Pierre Robin Sequence, we can put you in contact with Roza so that you can lean on each other for support and advice. She loves to share advice, help and support - as well as create awareness through her journey.
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