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
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
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
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
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
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.