Robert Oliver
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Fundraising for Martin House Hospice for Children and Young People
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PLEASE TAKE 5 MINUTES TO READ THE FOLLOWING PLEA FOR SPONSORSHIP
I will be taking part in the event Hell on The Humber in memory of my son Alfie who lost his battle for life on the 30th June 2012. I am raising money for Martin House Children's Hospice.
The Hell On The Humber 12 Hour Endurance Race
The event sees competitors facing the weather, fatigue and sleep deprivation in their bid to travel the longest distance possible in 12 hours of continuous running, marching and walking with the clock and their own minds and bodies to beat.
The race takes place on a closed, traffic free 4 mile circuit on the World famous Humber Bridge, taking competitors over the bridge twice every lap, only leaving to pass through the admin and support area where nutrition and water is supplied. You couldn't ask for a better event venue, from the bridge you have amazing views of Yorkshire and Lincolnshire, with an often fantastic sun set and sun rise, but be warned, when the weather turns there's nowhere to hide, the wind and rain can slow even the strongest of competitors to a crawl...
Alfie was born at York Hospital in July 2008 and soon afterwards we were told that he had a problem with his heart. Within hours of his birth he was critically ill and was rushed to Leeds General Infirmary where it was discovered that he had a rare heart condition called transposition of the great arteries (his main arteries were in each others place). When he was about 10 hours old he needed a procedure called a Balloon Septostomy to stabilise his condition. When he was five days old my wife was finally able to hold him for the first time. When he reached 16 days old he underwent an 8 hour open heart operation to correct his heart defect. Two weeks after this we were discharged and happy to be home. Unfortunately at Alfie's first outpatient appointment we were told that his heart was still under significant pressure. We were admitted for an investigation in what was supposed to be a fairly routine procedure which should have involved a 2 day hospital stay. Unfortunately during this procedure Alfie's heart stopped. Thankfully due to the skill and determination of the doctors Alfie was stabilised, although he remained critically ill. It was during this procedure that it was discovered that Alfie suffered from a very rare condition called Pulmonary Hypertension. Alfie was so unwell that we were told to prepare for the worst and put in touch with the local children's hospice. Alfie required breathing support for 9 days and was heavily sedated during this period. He remained on intensive care for two weeks and thankfully responded incredibly well to the medication and was described as a miracle by the medical staff. He returned home but needs to take several medicines, one of which he takes six times a day to control his pulmonary hypertension.
Pulmonary hypertension is a disease in which the blood pressure in the arteries in the lungs elevates putting pressure on the heart and reducing the amount of oxygen that is able to reach the tissues in the body. Unfortunately there is no known cure, but there are effective treatments that can help sufferers if they are diagnosed early in the disease progression. Untreated, PH has a worse prognosis than many forms of cancers.
In August 09 Alfie collapsed at home and required prolonged CPR by our neighbour, paramedics and A&E staff. Eventually his condition was stabilised and he was transferred to Leeds General Infirmary. It was then doctors discovered that Alfie's pulmonary artery had grown to such a size (due to the pulmonary hypertension) that it was pressing on the back of his trachea and bronchi. This had effectively caused his airway to collapse. Alfie needed to be ventilated and required lots of help as his condition was unstable. Again during this crisis the doctors warned us that Alfie may not survive as there was were no treatment options available to treat such a serious problem. Again we were told that it would be a waiting game and it was up to Alfie. Again to everyone's surprise Alfie was successfully weaned off the ventilator and transferred to the ward after 8 days on intensive care. After a further 5 days Alfie was discharged. We have been warned that there is no guarantee that Alfie will remain well. He has once again defied the medical profession. They continue to be surprised at how well Alfie is on a day to day basis considering his health problems and the amount of time he has spent in hospital in his short life.
Alfie also fell ill in December 2009 when he was rushed to hospital with breathing problems caused by a respiratory infection. He was thankfully stabilised but went on to developed a secondary chest infection. After 4 weeks in hospital he was discharged on home oxygen only to be rushed back into hospital 5 days later after contracting another respiratory virus. After a week at home we had to spend another 5 days in hospital after Alfie contracted a D&V bug. In total we had spent nearly eight weeks in York District Hospital including the Christmas and New Year period. Unfortunately for Alfie the last eight weeks had taken its toll and Alfie's condition had deteriorated. He was seen by the Great Ormond Street team who wanted to see him London as soon as possible. We were warned that he was most likely going to need a drug called Epoprostenol which would mean a Hickman line and a 24 hour infusion, however there was one more oral drug and it was decided that it would be unfair not to give it a go. Unfortunately this was ineffective and Alfie continued to deteriorate as his heart failure progressed. He stopped talking, moving, developed pockets of fluid in his abdomen and became increasingly breathless. After another review at the LGI by his Great Ormond Street team in April 2010 he was brought down to London for the implantation of the Hickman line. We spent 10 days in Great Ormond Street while we learnt how to cope with the Hickman line and making the drug up. It used to take about 30 minutes every day to change his drug, this needed to be done every 24 hours.
Alfie initially responded well to the epoprostenol, however the benefits were short lived and Alfie was assessed and accepted on the Heart-Lung transplant list. Alfie was also fitted with a feeding tube in February 2011, this was to help get extra calories into Alfie as well as his medicines.
Alfie enjoyed a relatively stable period during 2011, although he was never well the combination of medicines, supplementary feeds and plenty of love, care and attention seemed to give him a reasonable quality of life. Alfie even managed to start attending nursery two mornings a week. Life was still very difficult for all us a though because of Alfie's medical needs made it impossible to leave him with anyone. Our families do not live locally and because of the high level of care that Alfie needed we did not often get a break, we committed ourselves to giving Alfie a good life. Alfie could did not have the strength even to sit himself up so required 24 hour care, he never slept very well as the nights were constantly broken by episodes of discomfort. It was during this period that Martin House became an integral part of Alfie's care team.
Unfortunately Alfie's health started to deteriorate once again at the end of 2011 and the last six months of Alfie's life were a real struggle for all of us. Once again the fluid in his abdomen became a problem causing severe reflux, vomiting and breathing problems. Alfie's heart was just under to much stress and he sadly passed away on the 30th June in our arms surrounded by family, at Martin House Children's Hospice. He was two weeks short of reaching his 4th birthday.
Martin House have provided us with invaluable support over the last two years and were there to the very end, they provided Alfie with the best palliative care we could have asked for. During respite visits they gave us a real break from the responsibilities of caring for him. In the last six months of Alfie's life they did everything in their power to make him more comfortable. After he had passed away we stayed at Martin House until the funeral so we were able to just concentrate giving Alfie the best send of we could. They informed the relevant agencies, hospital departments and anyone else we wanted informing of his passing. They helped with the funeral arrangements. We can never repay the kindness and consideration we were shown during this very painful period.