A Ruddington family is appealing for help to raise funds – to allow them to get their five month old baby boy home from hospital.
After a complicated pregnancy, Argyle and his twin sister Thorunn, were born via cesarean section at the Queen’s Medical Centre (QMC) on October 24th last year at 35 weeks – weighing 6.4Ibs and 5.5Ibs respectively. Apart from a few feeding issues at the very start, baby Argyle appeared happy and healthy – however his breathing always seemed difficult. His mum and dad Charlotte and Kenny Jakes, who both work in the military, shared concerns about this with doctors, but his strength and weight gain were normal so the symptoms were put down to mild bronchiolitis.
Charlotte explains: “Unfortunately, at only seven weeks old on the 12th of December, Argyle was picked up after a nappy change and started to turn blue. Kenny scooped him up and sprinted out of the door through the village giving him breaths along the way to the village health centre. He was blue and limp and was found to have no output, but the surgery was excellent. Oxygen and CPR was given, and he was taken into the QMC by ambulance.”
Argyle was admitted to the Intensive Care Unit there – so being separated from his twin sister. He had a variety of tests, resulting in the rare diagnosis of an extra heart vessel around his trachea. As he grew it had tightened, crushing his wind pipe. That required heart surgery to remove the extra vessel at Birmingham Children’s Hospital, before the baby boy was returned to Nottingham.
“After the surgery, Argyle looked unwell and swabbed positive for Swine flu and type A flu” remembers Charlotte. “Time passed to the point where both flus should have cleared, however he was still struggling to breathe, his respiratory rate was high, and he was very pale. We always felt that he was still unwell, but we were reassured that everything was fine. Our concerns came to fruition when he arrested again after another nappy change. Another bronchoscopy was performed, this time with a flexi scope which went deeper into the lungs. It showed both bronchi to be completely collapsed. How he had survived was a mystery to the medical team!”
Argyle now needed a permanent artificial airway to ensure that he would not stop breathing again. The only sensible option was to have a long-term tracheostomy to give him the stable airway he desperately needed. “We are now weeks post tracheostomy and living the reality of Long Term Ventilation” explains Charlotte. “It is a challenging time and significant thought needs to be given as to how our situation is managed. As parents we are devastated; little Argyle is now for the foreseeable future attached to a ventilator. Simple things like tummy time are difficult and moving around requires taking a ventilator, suction kit oxygen bottles, monitoring equipment. We cannot hear his voice, we cannot hear him cry and tragically he is still separated from his twin sister.”
The next challenge is to get Argyle home. Doctors say he is now medically stable, and the Jakes’ Ruddington home is suitable to accommodate a child with his complex needs. But there’s a big problem: “To keep our house both my husband and I need to work full time to cover the mortgage. Neither of us have conventional jobs and do not have predictable working hours. It appears the system does not support working parents with normal financial outgoings. The care package available is offering some overnight assistance and only minimal daytime help, which would not allow us to work full-time and therefore keep our home. We have serious concerns for the health and well-being of our other two children and, without support, all our attention will have to be devoted to Argyle – and it is difficult to see how we will be able to provide the care and attention that our other two children need. It is a very worrying time trying to balance all elements of family life.”
Additionally Charlotte and Kenny have learned the care package could take months to resolve. Argyle could even see his first birthday in hospital – despite there being no medical reasons for him to still be there. The family is also facing the additional costs of adapting its lifestyle to accommodate a sick child. They need to purchase a new vehicle as their current car is not large enough to cope with a family of five, and the oxygen bottles and additional equipment required if they want to travel anywhere with Argyle. They will also need to convert one of their rooms to accommodate the needs of a long-term ventilated child.
Family and friends in and around Ruddington have launched an appeal to raise the funds necessary to “Bring Baby Argyle Home” – and donations are being gratefully accepted >>HERE<< to help them reach their £50,000 target. They’re also organising other fundraisers such as a pop-up shop in Rainbows and Lemon Drops in West Bridgford this Friday and Saturday (29th and 30th March) plus a Quiz Night at the Gamston Lock pub on April 12th. They’re also enjoying the support of Nottingham Forest player Jack Colback (pictured above) who’s been to visit Argyle in Hospital on the High Dependency Unit at the QMC.
UPDATE 18th MAY:
The latest fundraising event is a ‘Charity Dinner’ at The Ruddington Arms on Monday 20th May. Three courses cost £25 or two courses £20, which includes entry into the raffle.
Organiser Sarah Jacques says: “Alternatively you can just join us for drinks and purchase some raffle tickets. Prizes include signed Notts County and Notts Forest football kit, gin hampers, weekend passes to David Lloyd, vouchers for local restaurants and lots lots more.”
For more details about the meal, and to book a table, please call The Ruddington Arms directly on 0115 9841628.
Charlotte asks: “Please help us bring Argyle home and unite him with his twin sister and older brother. We are raising awareness of his condition and funds to pay for a supplementary care package to allow us to bring him home safely and responsibly with the care he needs whilst also preserving the well-being of our other two children.”