Holly

Holly is a happy, sociable and confident girl with a bright and infectious smile. She has a cheeky sense of humour and is mostly always happy.We did not know Holly had Downs Syndrome before she was born and with hindsight I think I am glad about this as I would probably have spent the time worrying.

As a baby, Holly was quite poorly, constantly full of phlegm and mucus which would cause her to constantly cough, be sick, choke and unable to breathe easily. She often had a chest or throat infection which would end having long hospital stays as she needed oxygen. At her very worst, Holly ended up in intensive care on a ventilator on one admission, as she was so poorly. Her weight gain was also very slow as a consequence of constantly being poorly. 

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Investigations showed that Holly had severe tongue hypertrophy, causing severe sleep apnoea, and laryngomalacia, both contributing to respiratory problems. Ultimately, Holly ended up with a tracheostomy just before the age of 2. This surgery was life saving and life changing for Holly. Tracheostomy care is very complex, and requires specialised support and care, so we were severely restricted in what we could do with Holly and as a family. Communication for Holly was also compromised as she was no longer able to make any sounds, so her speech was severely delayed and impaired. Holly also had a gastrostomy button fitted in order to improve her feeding, and nutrition to build up her strength safely. Holly is still fed via gastrostomy as many of her feeding and swallowing issues remain. 

Holly also has bilateral conductive hearing loss, so underwent further 2 stage surgery in early 2013 at the age of 4 to have bilateral Bone anchored hearing aids (BAHA). Holly’s tracheostomy was successfully removed in April 2016 and the stoma surgically closed in July 2016. This left Holly with a tracheostomy scar. Holly was able to take up swimming safely again without the risk of water entering her lungs directly through an open stoma. Now Holly absolutely loves the water, she’s a natural little mermaid and has competed in swimming galas and won medals with a disabled swimming club. Holly’s scar is a constant reminder to her, and brothers Ben and Nicky, and Mummy and Daddy, of all that she has been through in her short life. Her feeding and some of her respiratory issues still remain, especially when she is poorly, but Holly has smiled and laughed through everything she has been dealt, and shown unbelievable strength and bravery. Holly has made us proud, grateful and humble and we are completely in awe of her.

To any expectant or new parent, I would just tell them not to worry and enjoy their new baby and experiences as they would otherwise. Yes, Holly has Downs Syndrome and it does affect her in some ways, things she can or can’t do, but if you worry about what may never happen, you will miss what is going on right now under your nose, and I have found that time is a very precious commodity which we should make the very most of while we have the chance. Holly’s Downs Syndrome does not define her - it never has, and I don’t think it ever will. There is an awful lot of information available about Downs Syndrome, both from ‘experts’, and those who have travelled their own journey. Some find this helpful, or reassuring, but I have stopped looking for information and answers as she is Holly, pure and simple, through and through! Holly will do things her way, when she is ready and able, just like her brothers.

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