Within minutes of the birth he was taken away. His blood oxygen levels were not as they should be, we were told this was probably just as a result of him needing to clear his lungs but as the time passed we realised something more was wrong.
After a few hours we were taken into a quiet room with the doctor. She sat us down and informed us that they believed our son had a heart defect that was preventing oxygen from circulating around the body as the main arteries of the heart were the wrong way round. This meant that oxygenated blood was only going from the lungs to the heart and then back to the lungs, but not round the rest of the body. The only thing that was giving him oxygen was a small duct we are all born with, that runs between the two ‘systems’ and closes up 24 hours after birth.
The Doctor was unable to give us any assurances of survival or potential consequences of this defect, but arranged for our son to be transferred from the hospital to The in which specialised in hearts and lungs. Here they could, and did, confirm the diagnosis.
We were told we could sit with him till the transport team came. Not knowing if he would even survive the journey, it was then that we named him Joseph Michael.
The medical team at the Brompton operated on Joseph that evening to make a hole between the chambers of his heart to allow oxygenated blood to mix into the blood pumping around his body. On the same day he was born, Joseph survived his first major operation.
We now had to wait for him to get stronger before open heart surgery.
Four days later our family sat with us throughout the 6 – 8 hour operation until we finally got the call to say he had made it and the surgery had gone well. Indescribable relief.
We had been warned that the operation and drugs they injected Joseph with would make him swell up and seeing him following the operation was extremely distressing. Yet over the next 5 days we saw him make an incredible recovery; one by one the machines and lines feeding him drugs or releasing pressure from his heart were removed and he started to breathe on his own.
On the Tuesday night he was moved out of intensive care. With help from the nurses on Rose ward we started to feed and hold him, he started to cry out loud, (tubes down his throat had to this point prevented him from making sounds) and have a few visitors. On the following Monday, two weeks after he was born, we were told we could take him home.
We can never thank the Staff at the Royal Brompton enough. Without their help Joseph would not be here today. As a result we would like to give something back and raise money for the through a sponsored 315 mile bike ride starting in Cleethorpes on the 18 June and arriving at on the 20 June. In between we will stop at Lammas Leisure Centre - Sutton in Ashfield, Enderby Leisure Centre - Leicester, Hinckley Leisure Centre, Stratford Leisure Centre, Malvern Leisure Centre, Horfield Leisure Centre – Bristol. Any sponsorship from individuals or companies would be much appreciated and anyone wanting to do part or the entire bike ride with me and raise money for the Brompton themselves should contact me on 07785 350 173.
About the
is an internationally recognised centre providing heart and lung services for patients of all ages from across the country. The dedicated paediatric department is a national referral centre for children with heart and lung conditions. They care for children from their first day of life until they are 16 years old, when their care is transferred to a consultant trained in the treatment of adults. The sources of admissions to the Paediatric Intensive Care Unit (PICU) are generally children requiring intensive care treatment following cardiothoracic surgery, or emergency referrals from other hospitals.
Their Cystic Fibrosis (CF) Unit is the largest in and cares for nearly one thousand patients. CF is the most common inherited genetic disorder in the Caucasian population. CF is a life threatening, life limiting disorder. Quality of life can be severely compromised, even for those people relatively moderately affected by the disease, and the impact on families is profound.
In addition to their physical conditions, patients on Rose Ward also have to overcome a number of emotional challenges – they face the prospect of spending months in hospital, away from family and friends, and can also be cared for in isolation.
The Charity, Royal Brompton & Harefield Charitable Fund, provides money for state of the art equipment, innovative research and those extras which make patients’ stay in hospital more comfortable.
All gifts are appreciated and make a difference to the lives of children with heart and lung disease.
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