A mothers story of dealing with your child being diagnosed with not just one but three congenital heart defects.
Our journey in to the world of congenital heart disease started at our routine scan in December 2005. After a few trips to Bristol Children’s Hospital, as we live in Plymouth, Thomas was diagnosed as having Transposition of the Great Arteries (TGA) ,Ventricular Septal Defect (VSD) and Pulmonary Stenosis. February 20th 2006 and we are booked in to St Michael’s Maternity Hospital in Bristol to be induced, Thomas arrived at 20.16 and was whisked away to the Children’s Hospital down the road. The plan of action is to operate on Thomas within the ne xt week or so and perform the Switch operation, only this changes as his pulmonary artery is too narrow to perform this procedure and so we are sent home.
Five weeks later we are back in Bristol as Thomas’ saturation levels are in their low 60’s, after a catheterisation we are on our way back home.
We have regular check up’s with the consultant and we are told that Thomas will need open heart surgery in the form of the Rastelli procedure at a later date when he is about 2 years old. As his 2nd birthday approaches the anxieties increase and the ball is set rolling for him to have his surgery in the summer of 2008, the summer passes and we get our first date in October 2008 and so the rollercoaster begins.
We attend the pre-op and as we are just leaving we are told it has been cancelled and they schedule us in another date, which we attend, we get to the ward, Thomas has been starved and is due to go to theatre after lunch, 1 hour before we are told it has been cancelled and we travel back home to Plymouth. Two more dates and Thomas is poorly for both so they are cancelled, we get another date for April 2009, so 6 months after the original date we are still awaiting surgery.
April 7th arrives, the day before the surgery and we are on the ward in Bristol, the surgeon Mr Caputo discusses the procedure and we are told Thomas is the first on the list the next day. After a sleepless night we get to the next morning, about 8.30am we walk him down to the theatre and hand Thomas over reluctantly. We know he needs this surgery as he has deteriorated and needs to have this done, but we know that we could hand him over to the surgeons and not see him again and that is one of the hardest things if not the hardest that we have ever had to do, all your faith is put in to the surgeons. About 3.00pm we phone PICU to see if Thomas is back from surgery, they are just preparing him so about half an hour later we are allowed to see him.
PICU is very scary and one of the most difficult times we found it very difficult to handle, seeing your Son lying there with tubes and machines everywhere is hard and nothing prepares you for it. Fortunately Thomas only spent a couple of days in PICU and then he was back on the ward.
Two weeks after surgery we are going home and what a difference the surgery made. Thomas is no longer blue or breathless he has a new lease of life and is able to participate in activities that a ‘normal’ 3 year old does. Thomas will need further surgery when he is older but that hopefully is a long way off. We owe everything to the staff at Bristol Children’s Hospital for giving Thomas the chance to lead a ‘normal’ life, however long that life may be.
It has been a rollercoaster and there are times when you ask why us, but when you enter the world of CHD you realise that there are others who are experiencing the same as you and you are not alone you just learn to deal with what the world of CHD brings with it.
Written by Lisa Ellis
Lisa Ellis has given CHD-UK permission to use the photographs and this page.