UCD 2021 – Rosie’s story

We are Rosie and Mal, proud parents of Lyla aged five and Finn aged two. Our son Finn is our swan. He has many complex needs and we have been searching for answers since he was 16 weeks old.

Finn was our rainbow baby who completed our family. We were in a bubble of love and life was perfect.

At 16 weeks we took him to a physio appointment arranged by our health visitor as we were concerned that Finn was developing a flat head. It was at this appointment that our world as we knew it was shattered and our bubble was burst. All our hopes and dreams for our son were lost in an instant.

We met with a consultant in March 2019 and Finn was referred for blood tests, genetics tests, a CT scan, head X-ray, ophthalmology and an MRI scan. We were not prepared for the severity of his journey and we spent five months back and forth from various hospitals trying to find answers. Although we are still searching for a diagnosis, we are at least able to work with various teams to support his symptoms.

Finn’s major challenge is severe microcephaly – a rare neurological condition in which a child’s head and brain does not grow properly. Finn also has significant global developmental delay; he struggles with low tone and therefore cannot crawl or walk. In addition Finn is visually impaired and the cause of this is still being explored. Furthermore, we are still investigating Finn’s hearing and speech which are extremely underdeveloped.

Having a child with such complex needs and not knowing ‘why’ is extremely hard. Doctors cannot provide answers and there is no ‘closure’ on the situation or prognosis of what life will be like in the future. As a family we have had to grieve for the child and the life we thought we would have, whilst also having to be strong for both Lyla and Finn. For Finn, we need to know how best to support him and for Lyla we need to know how Finn’s condition will impact her future and her own family. 

SWAN UK was recommended to us as a place to find parents in similar situations to us. We have started to learn that having a child with complex needs can be an isolating experience at first and we are looking forward to finding support from parents and families who truly understand the ups and downs of this life. We one day hope that we can provide support to others too.

We are so proud of both our children. Finn has changed the direction of our lives, however, in doing so he has brought out so much love and strength in ourselves, our daughter and even our wider family.

We have all learnt so much from him, to celebrate small wins, to accept differences and to support those around us.

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