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Tia Mae Smith – Born 29th May 2009

During my pregnancy with Tia I had numerous scans due to my weight. Towards the end I was having one every four weeks or so. The majority of these were front on and looked as though she had enormous cheeks, after she was born I could instantly see why and was surprised nobody picked up on her PRS.


Seven and a half weeks before Tia was born my sister gave birth to a little boy. I was present at the birth and although utterly terrifying it prepared me for what I should expect. When I went into labour with my daughter 10 days before her due date I opted for an epidural after seeing the pain my sister went through. After a while I was told I would probably need a c-section as her heart rate kept decelerating during contractions causing concern. I stressed repeatedly I did not want a c-section.


The staff were great and decided to give me some assistance with forceps. Because they suspected her cord was wrapped around her neck there were a number of doctors and consultants present when Tia arrived at 16h30 weighing 6lb 9oz. She was taken straight to a little resuscitation trolley at the back of the room, when she finally cried she sounded like a little monster. It was the strangest cry I had ever heard my sister joked I had given birth to a monster as she cried A RAAA A RAAAA.


I could hear the doctor saying her chin is very small. (At this point I thought silly doctor she’s a baby she doesn’t want a huge chin.) within a few minutes I could hear the doctor telling the midwife in the hallway she needed to go to SCBU immediately, I hadn’t even seen her, I felt so scared and upset, the midwife fought more corner and shouted at him telling him he needed to tell me before just whisking her away and my sister demanded they let me hold her before she was taken. She was placed on my chest and instantly removed. I didn’t even know what she looked like, or what the problem was with her chin, I was scared and confused.


I asked her dad to go and sit with her, I didn’t want her left all alone. It was so confusing and not at all what I had expected after being with my sister only a few weeks earlier. About an hour later a doctor came to talk to me and explained she had a cleft palate and a small chin. He left immediately leaving me no time to ask what he meant by a small chin. I knew my dad had had a cleft palate when he was a baby so was quite relieved as I knew this didn’t really affect him into adulthood. I was beginning to regret my choice of epidural as I was left there unable to walk, it was over 3 hours before a midwife came to take me down to see my daughter.


She was beautiful with such thick dark hair. I could see what they meant about her chin and at first thought she didn’t even have a mouth I was shocked and worried about how she would eat and talk. By this time it was quite late and I felt alone and confused having to sleep at the other end of a large ward in a room where everyone else had their babies.


The next morning a consultant came to speak to me, he brought with me the only thing he could find in a medical book about PRS and reassured me that her chin would come forward he was going to Google some pictures for me. Shortly after this the cleft nurse came in to explain feeding and answer all my questions, followed by my mum and dad. Whilst they were there my dad’s mum called the hospital to speak to me and asked if she had a ‘receding chin’ this was the first time my dad knew that he had PRS it had never been mentioned his entire life, he smiled and said there was somebody like him now


After 2 weeks in hospital learning to tube feed, squeeze bottles, nurse her on her stomach instead of her back etc we were finally allowed home which seemed daunting at first. She learned very quickly to pull and sneeze the NG tube out which left us sat in the children ward for long periods of time waiting for somebody to pass it again. She didn’t want to drink and we even had trouble with solids. At times I thought things would never improve she ended up back in hospital a few times with reflux problems and chest infections.


On the 28th January 2010 (my late grandmothers birthday) Tia had her cleft repair. I was so worried but knew the date was a sign that my grandma would be with her. She was out of theatre in less than 2 hours and was sat up playing with the nurses when we were allowed down to recovery to collect her. 45 minutes later she drank a 6 ounce bottle I couldn’t believe it. From then she went from strength to strength learning to walk, talk and play with other children.


She was given glasses shortly after her surgery due to being short sighted and we were referred to Addenbrookes at Cambridge to be tested for sticklers syndrome. In 2011 we were diagnosed as having type 1 sticklers syndrome and found out we had a half sister who also had the PRS as did one of her children.


Tia wears hearing aids due to fluid build up but apart from that you would never really know by looking at her that she had ever had a cleft or PRS. She has speech therapy and is seen by lots of professionals on a regular basis but is an amazing little girl who doesn’t stop talking full of energy and is excited about starting school in September.