so what is TOF

So some medical facts about Tetralogy of Fallots, you are going to see some words that you may look at and think good lord what on earth does that mean, I know I did.  But to help us understand what is going on with our little babies body's we do spend a lot of time reading about what is wrong and trying to explain it to others in a way that they understand without freaking them out with medical terms.  Sadly broken and cant be fixed only patched doesn't really explain much to people.  So here are some facts bought to you by the British Heart Foundation:

Tetralogy of Fallot is a serious heart abnormality. There are 

two main problems. 

• The pulmonary valve is narrow (pulmonary stenosis) and 

 the muscle below it is thickened. (Ruaidhri's valve never grew)

• There is a large hole – called a ventricular septal defect 

 or VSD – between the two main pumping chambers of 

 the heart (the right and left ventricles) (Ruaidhri's could not be patched)

In the normal circulation, blood passes through the lungsto collect oxygen. In babies with Tetralogy of Fallot, the narrowing in the pulmonary valveand the thickened muscle below it mean that less blood can flow through to the lungs. This means that thelevel of oxygen in the blood is low.Your baby will need to have an operation to correct theproblem. This usually takes place when the baby is 6 to 12 months old, but the timing varies from one baby to another.          

Hope I haven't lost you just yet.  Symptoms :

The low level of oxygen in your baby’s blood can make him or her appear blue, particularly on the lips and tongue inside the mouth, and on the hands. How blue your baby looks depends on how severe the pulmonary stenosis is. 

,Some babies appear pink and just become slightly blue when they cry, while others may appear blue all the time. 

Some babies with Tetralogy of Fallot may have attacks where they suddenly become very blue, or very pale or floppy, or faint. These are known as hypercyanotic attacks,and are sometimes called spells. If your baby has attacks like this, you should tell the paediatric cardiologist immediately,because the attacks can be very serious and may even be life-threatening. It is usually possible to control these attackswith medication, but they can often mean that it is time to plan surgery. (Ruadhri started to have the spells before his last surgery)  

If your baby is diagnosed with Tetralogy of Fallot, your doctor will discuss with you the option of having a test to find out if he or she has a chromosomal abnormality. If the Tetralogy of Fallot is diagnosed before birth, this test can be carried out before your baby is born.(We never knew until he was born)

Most babies can go home as normal soon after birth,as they don’t need any special treatment immediately.

However, your baby will need major surgery later on, usually when he or she is between 6 and 12 months old. Without this surgery, most children with Tetralogy of Fallot would die before adulthood. 

Surgery

The type and timing of treatment depends very much on how blue your baby becomes, and on how well the pulmonary artery grows. If the pulmonary artery doesn’t grow well,your baby may first need to have a shunt operation to improve the blood supply to the lungs, and later on havea major operation to repair the heart. A shunt  operation usually involves placing a small tube between the pulmonary artery and the artery that feeds blood to the right arm. Very occasionally a valvoplasty may be done instead of a shunt operation. This is when a catheter (a fine,hollow tube) with a small balloon at its tip, is used to stretch the narrowed pulmonary valve open. You will need to take your baby for outpatient visits after any of the treatments described above.

If the artery has grown well, your baby will probably have a single major repair operation. Your baby will be given a general anaesthetic. The heart is stopped and the function of the heart is taken over by a ‘heart-lung machine’, which makes sure that blood is still pumped around your baby’s body.

During the operation, the surgeon will close the hole between the two pumping chambers of the heart (the VSD) (Ruadhri's couldnt be patched)by sewing a patch over it. The narrow pulmonary valve will also be widened. If there are also narrowings in the pulmonary artery, these can be treated at the same time, by sewing a patch into the wall of the artery.
After the operation, your baby will have a scar in the middle of the chest along the breast bone.
Although this operation is often called a ‘repair operation’ or ‘corrective surgery’, it never makes the heart completely normal.

What are the risks of surgery?
Most children will survive surgery and have a very good quality of life.

However, all major heart operations are very serious and carry a small risk of death, or of major complications such as brain damage, kidney damage or lung complications such as pneumonia. It is important to understand the risks associated with your baby’s operation. The cardiac surgeon will explain to you the risks for your baby before you give your consent for the surgery.

So those are the facts,it's a lot to take in but its facts that families are dealing with all the time. They are having to digest and filter out what they tell people, you never want to give all the facts.  Its pretty straight to the point punch in the bollocks kind of stuff and its what you pretty much get told in hospital.  It is very much a live or die situation and no-one wants to deal with that in their child, or face the fact's. I hope this helps people understand why heart parents are some times a tad emotional, angry, tired, stressed out people, and the reaction you get from them when you say, "it's alright they can be fixed and be normal" is justified.  And why if you have a cold they say don't visit, heart children don't do germs well, and they don't just get colds they get hospital stays.  Each child is different you will never have to two children with the same symptom's or condition and each child needs to be treated differently from the next. Anyone with a CHD child lives in fear and on their nervous and you are forever wondering what the next day brings, or what the next clinic appointment is going to have in store, when the next surgery date is going to be. Your whole life changes...