Georgia’s Story
Georgia’s sons, Theo and Jude, were both born with a cleft, 6 years apart. In this powerful piece, Georgia looks back on her experiences of diagnosis, feeding and surgery, hoping to reassure other parents and carers who might be going through similar experiences.
My name is Georgia and I am the proud Mummy of two beautiful sons. Theo is 6 and Jude is 3 months old.
I received Theo’s cleft diagnosis at my 20-week scan and I was extremely scared and confused. I was thinking, ‘what I could have done wrong to cause my child to have this condition? Was it not taking folic acid, was it due to stress, or not eating healthily enough?’
The next 19 weeks went by in a blur with visits from the Cleft Team and spending hours trawling through the Internet reading information about clefts and cleft related conditions. Many tears were also shed and I felt guilty and alone worrying about how I would feel about my son and how others may judge me and stare at the baby who didn’t look like the other “perfect babies” at the mother and baby groups. I worried about him getting bullied at school and not fitting in.
My due date neared and in November 2014, after a traumatic labour, I gave birth to my little man Theo who had a unilateral cleft lip and alveolar notch. He was beautiful and my worries about what others thought didn’t matter to me anymore. He was my baby and perfect in my eyes.
He was beautiful and my worries about what others thought didn’t matter to me anymore. He was my baby and perfect in my eyes.
He struggled to feed at first but after a couple of weeks he slowly but surely got the hang of it.
Theo had his surgery at 4 months old and recovered brilliantly. Apart from a small scar you really wouldn’t know he’d ever had a cleft. The surgeons and whole Cleft Team at Salisbury hospital were really amazing and could not have been more supportive and informative. Theo is due one more surgery between the age of 7 and 8 when he will have his Alveolar Bone Graft.
Fast forward to February 2020 and finding out we were expecting our second child, just before Covid changed our daily lives.
I didn’t think for a second that this baby would have a cleft. When my partner would bring up the possibility I would dismiss it immediately as honestly I thought, ‘surely lightning couldn’t strike twice?’ We were told that because we didn’t have any family history, the chances of this baby having a cleft were extremely low. I put it to the back of my mind and carried on as normal with my pregnancy.
At 16 weeks I decided to have a reassurance scan to check on baby and, fingers crossed, to find out the sex. During the appointment we found out that we were expecting another darling son.
Next, happiness turned to complete devastation when the sonographer focused on baby’s face. She looked at me with a sad expression and confirmed that our second son had a cleft. I immediately burst into tears saying, ‘but I did everything right this time, I took folic acid like the doctor said!’
The sonographer assured me that it was nothing I had done wrong and gave me a big hug which I needed so much. I asked which side the cleft was on and she said both sides. My heart dropped again and I cried harder. During the drive home I felt drained and deflated. I had built this day up to be such a happy one and my family and friends were all waiting for my call, putting bets on the sex. I felt sick that the joyful news would be tainted by having to share that I was having another cleft baby.
After going through the Zoom meetings with the Cleft Team and after several extra scans, Jude was born in October 2020 with a complete bilateral cleft lip and palate.
As soon as I held him I fell in love as I did with his big brother. The only thing I could think of was how beautiful he was and how lucky I was to have two amazing sons who were happy and otherwise healthy.
As soon as I held him I fell in love as I did with his big brother. The only thing I could think of was how beautiful he was and how lucky I was to have two amazing sons who were happy and otherwise healthy.
Shortly after he was born the midwife and my partner took Jude to the special care to put down a feeding tube. He hated the tube and would try and rip it out.
That afternoon the Cleft Nurse came with her Dr Brown’s bottles and we tried giving him his first bottle feed and he never looked back. He’s gained weight consistently and has proven everyone wrong. He wasn’t letting any cleft hold him back. Apart from a few ghost teeth causing problems he has jumped through every hurdle and is going from strength to strength and is just the happiest, most smiley baby.
He’s gained weight consistently and has proven everyone wrong. He wasn’t letting any cleft hold him back. Apart from a few ghost teeth causing problems he has jumped through every hurdle and is going from strength to strength and is just the happiest, most smiley baby.
Due to the Covid backlog the surgeon cannot say when his first op will be but he hopes to have a date before April. Jude will need several surgeries, 3 being within the first 12 months then a couple more as he gets older. Although this fills me with nerves and sadness I know he will come out the other side with his gorgeous new smile just like his brothers.
My boys really do have a bond for life and I couldn’t be any more proud to have two special 1 in 700 babies.
