We are Jamie & Amy Sparkes. We have a son called Harry who is 9, a daughter called Poppy who is 5 and another son called Toby who is 2 (see image left). Harry & Toby love dropping Poppy off for her 'mini breaks' at Zoë's Place. In January 2012 we found out that we were expecting our second child and had a fairly uneventful pregnancy until May 2012, when we had out 20 week scan. The Sonographer thought that there was something wrong with the scan and sent us for further tests at the Foetal Centre in the Liverpool Women's Hospital. The following the abnormalties were confirmed.
Two weeks later we met with the Geneticists from Alder Hey Hospital. Over a period of weeks, as the full resylts came through, we were informed that our baby had Cri Du Chat Syndrome. They painted a very bleak outlook in relation to survival rates, ability to walk and talk and other developmental delays. 'Cri du Chat' is french for 'Cry of the Cat' as infants with the syndrome cry in a way resembling a small cat, due to the narrowness of their Larynx. This cry is present during the first weeks of life and changes later.
It is not common for Cri Du Chat babies to be diagnosed before birth. We had time to come to terms with and accept how our baby would be. The news was a massive bomb shell in our lives. We had so many questions, too many unknowns, our dreams were shattered - the joy of having a second child now had a huge shadow cast over it.
How would we cope? What would our baby be like? What will our lives be like? What will we tell our son? How do we tell our friends and family? What do we do to prepare ourselves? I am not sure if we have had all of our questions answered or not - but we are the other side of that initial shock. When Poppy was born, she went to the special care baby unit. We both stood and watched as nurses and doctors poked, prodded, inserted tubes and attached wires to our baby. She stayed in an incubator for several days and the staff established her feeding - within a week, we were able to take Poppy home.
Over the first few months it became apparent that Poppy had several medical issues that needed attention. Laryngomalacia, severe reflux, constipation, breathing difficulties, vomiting, poor weight gain due to huge feeding difficulties, not to mention Chicken Pox, a perforated ear drum and Slap Cheek. Poppy had three 999 Ambulance admissions, 4 procedures, 3 operations plus a multitude of appointments with 8 different consultants, and home visits from a Physiotherapist, Portage Play Therapist, Speech & Language Therapist, Dietician and various community Nurses. We carry more bags home from the Chemist thatn we do from the Supermarket. Poppy is predominantly fed through a tube into her tummy. She does nt walk yet but crawls and is able to pull herself up to standing for short periods of time. She still wears napies. She does not use words but makes lots of sounds. She also has a hearing aid.
Imagine trying to get a very happy and excited Octopus to lay still while you change its nappy and get it dressed, or try to sit it in a shopping trolley and take it round the aisles of the Supermarket... without knocking anything off the shelves - you are getting close to the fun and games that we have with Poppy! We have amazing friends and great family who support us through the daily joys of being parents of Poppy.
A colleague of Amy's introduced us to Zoë's Place. We could not have been happier to be offered respite care each month, offering us the chance to spend quality time with out boys, or to send the boys for a sleep over with family so that we can escape together! These times are invaluable and enable us to breathe in, take a step back, sleep, recover and prepare ourselves for another month providing for Poppy's unique needs.
Initually we felt guilty for leaving Poppy and having fun without her. It wasn't until we didnt have Poppy at home that we realised how much time and energy it takes to support her. We soon realised that she has more fun than us during her mini break at Zoë's Place. She loves interacting with the other children, playing in the sensory room and climbing over everything in the soft play area. All of the staff, from the front desk, the cleaning and maintenance team, the fundraising team to the hospice staff... and anyone else we bump into, makes us feel welcome and have a big smile for Poppy when she arrives. We really so feel part of the Zoë's Place family.
There are lots of ways you can help to support our special babies, just like Cara. Whether it is a making a donation, signing up to a fundraising event or coming up with fundraising ideas of your own, it will all help to make a huge difference. Find out how you can help by clicking below...
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