Joanna and Harry’s story

December 2, 2019

Joanna’s son Harry was diagnosed with a Cleft Lip and Palate when she was pregnant in 2009. Joanna recently got in touch with CLAPA to share their story, and looks back at Harry’s resilience and determination over the years.

 

Harry (courtesy of mum Joanna)

In 2006, at my daughter’s 12 week scan, she was put at risk of Downs Syndrome as her NF (Nuchal Fold) measurement was high. I underwent further tests and at 14 weeks I was given the all clear. My happy, healthy, 8lb 12oz baby girl was born in February 2007.

Fast forward to 2009, and I was expecting again. The 12 week scan and blood tests were all fine, and I merrily skipped into my 20 week scan, excited to find out the sex of my baby. It was a moment I’ll never forget. Not much was being said by the sonographer, and the arrival of additional people in the room started to worry me. By that time, the sex of the baby seemed the least of my worries.

‘Cleft Lip and Palate’. I’d never heard of it. I left in a daze. All I remember was being told not to google it, so of course I did! Fear, worry, guilt, anger; I was feeling all the emotions. I was at a loss. I didn’t know what was happening.

I was having a boy.

I was referred back to the Fetal Medicine Unit for further scans and I saw the same consultant. He lightheartedly joked that I made it through the 12 week scan this time. I saw the scan, baby’s heartbeat, heart, umbilical cord. He reassured me that everything seemed ‘normal’ and that it would mainly be reconstructive surgery needed. As my unborn child had been diagnosed with a fetal abnormality, I was also advised that I could proceed with a termination. But he’d just told me everything was fine…?

Telling friends and family of the ‘baby news’ was upsetting. I felt I’d failed this little baby. Explaining what would be ‘wrong’ with him somehow took over from being able to have a ‘normal’ pregnancy.

I was put in touch with Ann, my Cleft Nurse, shortly after my 20 week diagnosis. She was amazing. I was invited to a tea party for expectant mums, cleft babies and toddlers, both pre and post lip/palate surgery. I attended further tea parties with Harry as a newborn, baby and toddler. These hours spent with everyone were so important. A chance to talk, listen, and observe. Ann, our Cleft Nurse, was always there. She was a point of contact for all of us, whenever we were in need of advice or even just needed reassurance.

Through CLAPA, I was able to receive a free bonding scan. It was a chance to have a sneaky peek of Harry at a 4D bonding scan. He was 34 weeks and put on a great show. I came away with pictures a DVD, keyring…it was an afternoon to remember!

 

Harry as a baby (courtesy of mum Joanna)

Harry arrived 3 weeks early and despite me wanting a home birth, I ended up at the hospital. He spent his first 5 days at the SCBU (Special Care Baby Unit) as he had fluid in his lungs. Antibiotics and the amazing care from the medical team didn’t keep him there too long. Ann came to see me once he was back out of SCBU. As Harry had been tube fed while he was in SCBU I had to be able to bottle feed him to get him home. Ann was there to help. I had been expressing milk during my hospital stay (using the machine CLAPA had lent me) and freezing it the fridge on the ward. I wasn’t able to breastfeed Harry but expressed milk until he was 7 months and topped up with baby milk. Harry was a hungry baby!

I first met Professor Haers when Harry was 6 weeks old. Along with a room full of other professionals and a screaming hungry baby! Ann was there too.

Harry had his lip surgery at 5 months and his palate surgery at 10 months. Apart from Harry’s whole body swelling up after both surgeries and him not dealing very well with dissolvable stitches, it was going well.

 

Harry as a baby (courtesy of mum Joanna)

Harry’s Dad left just before his first birthday. He’s not made contact since.

Feeding and weaning were never easy. Long days, long nights. It became the norm. Harry became a very resilient child. Maybe not intentionally, but we had to go on.

He’d passed his initial newborn baby hearing screening, but further tests around 2 years old started to show a significant loss. Harry was fitted with his first hearing aid in his right ear when he was 2, then his left ear 18 months later. He went back to one hearing aid just before he was 7 years old. He’s has every colour mold: glitter, marbled effect, red and blue sparkle for the Olympics. His options were endless! Audiology tests were quarterly. They may have taken some time, usually down to a hungry toddler, but he always had fun there!

Nursery was a great part of Harry’s early years. He attended full time nursery from the age of 10 months for almost 5 years. He was well cared for, made many friends and enjoyed the food – all the food, so much food!

Harry also had speech therapy until he was signed off at the age of 5, and now he doesn’t stop talking!

Harry didn’t walk until he was 14 months. He was a prolific crawler which meant that he could do anything, but once he found his feet, that was it! His energy levels never failed and we were soon enrolled at Little Kickers, Toddler Gym, trampolining, swimming lessons…anything to keep him busy! Nanny had her work cut out on the days she looked after him. He was the opposite of his laid-back older sister!

Over the years, we have attended many CLAPA events and tried to get to all the Christmas parties they arrange. Professor Haers will sometimes make an appearance too. These events are vital for Harry to see that he’s not alone. Social media has been great. A chance for him to read other families stories, see pictures of other babies born like him. Harry is also keen to spot people when we’re out who may have been born with a cleft. He knows he’s not alone. He knows he’s in the 1 in 700 club! 

Harry is also keen to spot people when we’re out who may have been born with a cleft. He knows he’s not alone. He knows he’s in the 1 in 700 club!

Harry (courtesy of mum Joanna)

Harry carried on with his trampoline and gymnastics and joined a squad in 2015.

From Reception to Year Two, Harry attended our local school, a small school with great pastoral care. In 2017, Harry moved schools and now gym is on the curriculum. The school is home to his new gym club. This is his happy place. Between gym and trampolining, he spends nearly 20 hours a week there. He loves the gym environment. He can be himself and isn’t judged for being ‘different’.

I think he’s been very fortunate so far. He’s not been bullied or received any bad judgement for the way he looks. I have many baby pictures around the house and although he may not ‘like’ how he looked when he was born, he was ‘my normal’ and he can see the journey he’s been on.

In July 2019 Harry became the British Champion with his Gymnastics Team Gym Club and the Elite Development Silver medalist in Trampolining. In September he took the Gold medal at the English Trampoline Championships. His resilience from a young age has certainly stuck with him. Focus, hard work & determination have paid off.

In July 2019 Harry became the British Champion with his Gymnastics Team Gym Club and the Elite Development Silver medalist in Trampolining. In September he took the Gold medal at the English Trampoline Championships. His resilience from a young age has certainly stuck with him. Focus, hard work & determination have paid off.

 

Harry going for Gold! (courtesy of mum Joanna)

CLAPA have been with me since Harry’s diagnosis of his UCLP at my 20 week scan. Our Cleft nurse, Facebook groups and other cleft families have been an invaluable support for the last 10 years. This happy go lucky little man has been through quite a lot, but we’ll always be grateful to our family and friends who have given us their continued love and support over the years. It has been a group effort at times, but I wouldn’t have it any other way.

Harry will undergo bone graft surgery later this year and orthodontics next year.

I like to think of him as ‘perfectly imperfect’. Born different, or born to be different?

Harry’s advice to other children is make sure they speak to an adult or friends if they are worried about anything. There are always lots of people that care about you.

 

Need to talk? Learn more about our Parent and Peer support service. 

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