Jacob D Thorley with Tetralogy of Fallots (TOF)

This page is dedicated to all the adults and children with Tetralogy of Fallots.

Jacob D Thorley arrived into the world on Wednesday in March at 6.31am weighing in at 5lb 2oz. After a few days on the neo-natal unit the paediatricians noticed that Jacob had a heart murmur, however they weren’t sure if something was wrong or if just the transition from womb to world.

Just before Jacob reached 1 week old we were told he had a Congenital Heart Disease (CHD) called Tetralogy of Fallots (TOF). We were told what would happen in his life and if something wasn’t done he wouldn’t have a very long life expectancy. It all seemed so much to take in.

It’s strange, some heart parents may feel the same, but something just switched inside, we both knew that not only did we have this tiny little baby to look after, love and enjoy but we also knew we had to become his strength. This little person was given to us for a reason, we had been chosen to look after him and provide everything he needs. We got over the tears and came to terms with his diagnosis quite quickly. Although sometimes inside I feel like I am breaking into tiny pieces that cannot be fixed I draw strength from the smile on my little boys face.

Jacob was all we ever wanted in the world, a little boy to love and to cherish, take to football games, ride bikes, walk our dog together and do what families do. On 28th July 2009 that was almost snatched from our reach.

Jacob was just coming up to 5 months old and his spelling had gotten quite bad, to the extent of morphine being needed to bring him out of his spells each time he had one. He was taken into hospital on 25th July after a serious spell which required an ambulance, we were told in no uncertain terms that we wouldn’t be able to take Jacob home until something had been done, whether this was a temporary solution or a full repair.

He had a cardiac catherter done on Monday 27th July and this proved that the situation in his heart wasn’t as complex as it could be and perhaps they could go ahead and do his repair on Thursday that week, even though he was still below the weight for the operation.

I arrived at hospital the following morning, alone as we were trying to keep things as normal as possible for Jacobs sake. There were a few people around his cot in the high dependency unit, I did wonder at first what was happening as they were fiddling quite a lot. Jacobs spells had gotten worse and he was having to be put on a morphine infusion as they weren’t sure how much more his heart could take. My beautiful little boy was led there, white as a sheet, not moving, with tubes and wires coming from everywhere - he was lifeless. I knew it was time to be scared and when the doctor spoke to me I asked “does dad need to be here…yes”. I knew then it was bad and I couldn’t help but break down. Dave of course was out of signal rage, what was I gonna say, I rang my mum next and all I could say was “I need you mum please come quickly”. I finally managed to speak to Dave. In the meantime my mum arrived, followed by Dave, followed by staff from ICU, followed by anaesthatists, then came the surgeon. Off we went to a little room, where we were told the harsh reality of the situation, Jacob needed to be operated on immediately, he was getting worse, they couldnt wait til thursday to do the repair. They needed to do a BT Shunt, we signed the consent which felt like signing his death warrant. The operation needed to be done, if it wasn’t he would die, but yet he may also in the operation too as he was that weak by this point, the surgeon stated his chances were at 30%.

I broke down, Dave broke down, my mum was trying to be strong for us both but it was so hard. We finally managed to compose ourselves and returned to his cot side, one last cuddle before he goes to theatre. I felt like it was a goodbye cuddle, I honestly felt with all my heart felt that he wasnt going to make it. The look on the surgeons face told a thousand stories. Whatever you have to do, you do it, nevermind more consent forms you just save our little boy.

The drive home was awful, we didn’t say much, we just sat waiting with my parents for the phone call from the hospital.

It came after 4 and a bit hours “can you come back the surgeon would like to see you”.

Off we went the 4 of us, again nothing but silence in the car, stomachs churning like mad.

The surgeon came into the room and had a smile on his face, 100% success!!! They had managed to perform the BT Shunt which would now enable our little boy to grow stronger and bigger ready for the full repair.

Jacobs life really turned a corner after his operation, he became more alert, more lively, more energetic, happier. The surgeon who operated on Jacob that day saved our little boys life and we will forever be indebted to him. A nice expensive bottle of red wine was purchased and handed over to him for doing such a good job and giving our little boy a better life.

We are now awaiting his full repair which is to be done in the next 6-8 months. He has issues with weight gain but still he is a little fighter, my brave little prince. We feel more positive about his repair operation and if it improves his quality of life even more than the shunt then we will be happy. Jacob will always know what he has been through as a child, he will have the scars to show for it, never will he be embarassed by his scars we will do whatever we can to encourage him to be proud of what he has been through.

Thank you for reading our story.

Kerrie, Dave & Jacob Thorley

Wrote by Kerrie Thorley
February 2010

Kerrie Thorley has given CHD-UK permission to use the photographs on this page.