This weekend, I will be celebrating my 34th birthday. I bet you are thinking, yes everyone, celebrates their birthday. However, when I was born, I was diagnosed with tetralogy of fallot – a serious heart condition. My parents were told to make the most of me. They were uncertain about my future.
Tetralogy of fallot, is a heart condition that get’s recognised as TOF. It is a condition, that has four things wrong with the heart, they are:
- A hole in the heart
- an obstruction from the heart to the lungs
- The aorta (blood vessels) lies over, the hole in the lower chambers
- The muscle surrounding the lower chamber, becomes overly thickened.
Not only was I diagnosed, with the four problems above, added onto the 4 problems were
severe pulmonary stenosis –
A thickened or fused heart valve that does not fully open. The pulmonary valve allows blood to flow out of the heart, into the pulmonary artery and then to the lungs.
VSD is a hole in the wall separating the two lower chambers of the heart.
In normal development, the wall between the chambers closes before the fetus is born, so that by birth, oxygen-rich blood is kept from mixing with the oxygen-poor blood. When the hole does not close, it may cause higher pressure in the heart or reduced oxygen to the body.
LPA arising from the aorta- and most recently dilated ascending aorta.
As you can, see it’s slightly complicated. As I was born in the 1980’s technology wasn’t fantastic and I didn’t have any surgery until I was two which was a Shunt. (Heart bypass).
Growing up as a child with a heart condition was difficult, I felt different, and I felt left behind, because, the condition limited me to many physical activities. And I would not be able to walk very fast, and often blue in the lips and nails. In fact I was surprised I had friends in school, and that I didn’t scare them off.
Towards the end of high school, my health deteriorated, and I had to give up PE, and I felt increasingly tired. There were discussions, of surgery, but not until I attempted to do my GCSE’s, so instead they started tests, and in my first year of college, I started counselling with the cardiac liaison nurse to prepare for surgery.
Committing to something so risky, and so life changing, at the age of 17, is scary, and I would have much rather have been spending the time with my friends, having fun and not thinking about life or death.
However, I was thankful I had my faith. It helped me focus on what was ahead, what God had planned for me and the ‘better things‘ to come.
In June 1999, I had my surgery, which lasted 7 hours. but I didn’t recover very well and spent nearly three weeks asleep in intensive care and 3 months in great ormond street hospital. During my recovery, I was diagnosed with Rheumatoid Arthritis and Di george syndrome, which we now realise has caused all my health issues and some difficulties I had at school.
During my time at Gosh, I was questioning God. I couldn’t move I had nerve damage down my leg and foot drop. And my vocal chords had been damaged and I couldn’t speak. I didn’t think, I should be grateful to be alive. I was angry, I wasn’t able to move, or talk to the other children or teenagers in the ward I was in. It caused many frustrations when I had reactions to medication and I couldn’t communicate why I didn’t want to eat because the medication gave me a funny taste in my mouth and gave me loss of appetite.
Seventeen years later, I can now see God’s faithfulness, I can now walk again, I can now speak, and I can sing again better than before I went under and had the ventilator in my throat.
Each day, is a celebration, and each day even when I struggle hugely with my RA, I am thankful I can walk my daughter to school, and that I can drive, and that I can go to college, and that soon I will be a qualified beautician. All these things, are what God has given me, and sometimes, we have to go through darkness to see the light, to see his Faithfulness, and to see what HE can do. Because with Christ we can do all things, even on the days we feel helpless, he is there and willing to listen and show us who HE really is.
I still don’t know what the future holds, I still have a leaky valve and it will one day need to be replaced again, but I know the God who made the stars made me how I am for a reason, and he is the one who is in control.