Maeve is a fighter

 
Maeve is a fighter

Precious little Maeve Cumberpatch was born in November 2016, 5 weeks early and weighing a little 3.9lbs (1.8kg).

Maeve’s parents, Chris Cumberpatch and Kirsten Foote, knew before Maeve’s arrival that she would be unique. There were the unusual findings on the scans and then Kirsten had needed to be admitted to hospital prior to Maeve’s birth.

At 35 weeks into the pregnancy Maeve entered the world and was diagnosed with Miller-Dieker Syndrome. Miller Dieker- Syndrome is a condition in which the brain does not develop normally. This limits many functions of the body, for example, Maeve may never sit up on her own. One characteristic of this condition is Lissencephaly, which means that Maeve’s brain is smooth and will not develop the visible ridges and grooves a normal brain has. Sadly, Chris and Kirsten soon learnt that most children with this condition do not live past the age of 2 years, and very few reach the age of 10.

Maeve was referred to Rainbow Place at 2 weeks old and has been cared for by the Rainbow Place nurses ever since. “Chris and Kirsten have been exceptionally brave and have accepted palliative care into Maeve’s life right from diagnosis. This allows them to focus on just how good they can make Maeve’s short life” says Rainbow Place Nurse, Jessica Dwyer.

Maeve is Chris and Kirsten’s first child, so not only are they learning to be parents, they are navigating parenthood in the medical world while learning to care for a baby with a life limiting illness. For Maeve, what might just seem like a sniffle or a cold for a healthy 6 month old child, can mean a month long admission into hospital to receive supportive care. Simply getting Maeve into the car takes twice as long, with her accessories such as feed pumps and suction machines to name a few. Things are never simple or easy.

In spite of Maeve’s condition, both Chris and Kirsten’s families are highly supportive and do what they can to help. Together the family celebrates milestones, such as Maeve’s 6 month Birthday. They are not afraid to create long-lasting memories with her, like going swimming and eating ice cream. Maeve loves music, twinkly lights and her pet cat Chino.

Sadly, the opportunity to create these memories is getting harder as time goes on. Recently, Maeve has begun to face more challenges as she has developed regular seizures and is troubled by recurring chest infections. This means that the time the family gets to spend together is often at the hospital while Maeve is in care.

In October 2017 Maeve spent a few nights in Rainbow Place care, giving the family a well-earned break, and enabling the Rainbow Place staff the opportunity to learn more about Maeve’s 24/7 care. At the end of November Maeve celebrated her first birthday – a milestone which, given the nature of her condition, was celebrated in style.

“Rainbow Place has made an extremely difficult time a lot easier for us as a family” says Kirsten Foote. “They have helped us focus on quality of life for Maeve, as well as providing invaluable practical and emotional support. We love our Rainbow Place family!”

Photo: Credit to Sarah Alloway Photography

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