13 April 2017

Seriously-ill Ellis home for 1st birthday & Easter

Twins Ellis and Bayley Wharton will be reunited for their first birthday thanks to the outstanding care and treatment received by staff at Nottingham University Hospitals (NUH) NHS Trust.

The milestone will be even more momentous as this will be the first time Ellis will be at home since he was born on 17 April 2016.

Ellis and his brother Bayley were MCMA twins who shared the same placenta and amniotic sac. This occurs in around 1-2% of all twin pregnancies and mum Jo went into early labour when she was 25 weeks pregnant. At birth the boys had bleeds on their brains, known as Intraventricular hemorrhaging (IVH), and Ellis has been receiving hospital treatment since, mainly due to a central apnoea that causes him to stop breathing whilst he is asleep.

The boys' mum, Jo, 36 from Lincolnshire, said: "We can't believe Ellis will be coming home for his and Bayley's birthday. The team at NUH have worked incredibly hard for us to reach this goal and I don't think Ellis would be here if it wasn't for the intervention from the hospital's Paediatric Critical Care and Long Term Ventilation (LTV) teams.

"Because of Ellis' low drive to breathe he has to have constant support to breathe. Thanks to the LTV team they were able to assess his needs and put a strategy in place to ensure he receives the correct amount of oxygen, especially throughout the night when he is sleeping. The introduction of a nasal mask attached to a home ventilator has meant he can have a proper night's rest, which has supported his growth and development. Over the last couple of months he has come on leaps and bounds and this has been the first time we have been able to consider bringing him home permanently."

Ellis was transferred to NUH six months ago so that he could be admitted to the hospital's specialist Paediatric Critical Care unit at Queen's Medical Centre (QMC). NUH is one of approximately 12 centres in the UK to have a dedicated LTV teams and one of only a few who offer support in the community.

Rachel Gregory, Wellchild LTV Nurse Specialist at NUH, commented: "The family have worked really hard with the team towards this and I'm so pleased that they feel happy and confident to take Ellis home on their own for his birthday.

"By having a dedicated LTV team we've been able to work with the clinical staff on Ellis' ward to put together a clear plan to get him home. Now that he is stable on the ventilator we are hopeful that he will be home permanently soon with support from community care partners. I'll also continue to visit and provide ongoing support to the family."

When Ellis does become an outpatient he will receive care from the hospital with support from other departments including Occupational Therapy, Physical Therapy, Speech and Language Therapy and Audiology.

Dr Charlotte Goedvolk, Paediatric Critical Care Consultant at NUH, said: "It has been a real team effort to get Ellis home. For the doctors and nurses it's lovely to see how he is developing and how much his character has grown over the past few months. It's wonderful when his family and siblings are here together at the weekends and it is nice to know that hopefully very soon this will be permanent."

Mum Jo commented: "Saying thank you just isn't enough. Every person on the ward has taken an interest and have provided holistic personal care. Working with us and keeping us informed every step of the way. Over the last couple of months Ellis has come into his own. He enjoys kicking and splashing about at bath times, is now able to go outside and enjoys looking at trees and really loves his food."

Jo and husband Mark have organised a little get together on Monday to celebrate the special occasion with friends and family who have help to support them throughout the past year.

"I think it's going to be quite emotional," added Jo. 

NHS Nottingham University Hospitals
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