December the 7th – 2 days of worrying and fearing the worst, no matter what anyone says or how many times you are told it’s going to be okay it’s still scary. What if they do find something wrong with his heart?
We went to fetal medicine in Southampton, there were 2 doctors and a trainee in the room scanning us, it was interesting to see how much clearer this scan was compared to ones we had previously. After about 20 minutes of scanning the doctors took us to another room for us to wait for the cardiologist to come over from the main hospital. As she left us in the room she said she could see a small hole in the heart, to be honest this was best case scenario for us and automatically me and Jimmy felt slightly relieved. A hole in the heart can sometimes mend itself before birth or even after, this was nothing compared to some of the defects I had read about online. Whilst we were waiting we were in good spirits planning to pop into TGI Fridays for lunch after the hospital already planning what we were going to order.
Finally Dr Roman the cardiologist arrived and was ready to scan us. After 15 minutes or so they took us back to this room however this time there was lots of people in there; the 2 doctors, trainees, cardiac nurses and the cardiologist and the first thing they said was “We’re here to discuss your options”
OPTIONS! Immediately when you hear this you know something is seriously wrong. Every time Dr Roman explained something to us it was like a gentle blow gradually getting heavier and heavier.
He pulled out a picture of a heart, here is a normal heart and here is what your baby’s heart is like. Your baby has Tetralogy of Fallot this is made up of 4 defects; a large ventricular septal defect, over riding aorta, pulmonary stenosis and hypertrophic right ventricular wall. Okay so I have never heard of Tetralogy of Fallot but from this day on these words will forever be engraved in my brain.
So this is treatable with surgery usually when the baby is 3-6 months old, he can go on to live a happy healthy life but will need continuous cardiac follow ups and may need further surgery when he is older. Before surgery he may have cyanotic spells where he turns blue and runs out of oxygen as the oxygenated and de-oxygenated blood is mixing.
Okay so I know this isn’t the best news but it’s treatable and we can handle this, me and Jimmy reassuringly looked at each other.
However some babies with this condition have a genetic condition called 22q micro deletion, this is an extra chromosome. Now we have all heard of Down syndrome but this is one I have never heard of before. Babies born with this can have learning difficulties but the severity of this is not known till they are older. This is a whole different condition for us to consider, the heart is treatable but now hearing that our baby could have 22q which cannot be treated by surgery was a massive shock and something we were not prepared for. At the 12 week scan you have blood tests to check the fluid of the neck for genetic syndromes and ours came back fine so why are we only hearing about this now. The only way to test for this is either an amniocentesis or a blood test when the baby is born, now the amnio carries a 1 in 100 risk of miscarriage, considering our baby’s heart condition was 1 in 3000 this seems like pretty shit odds to us. We left that day with some thinking and hard decisions to be made.
The car journey home was a good 40 minutes but it felt like a lifetime we just sat in complete silence just trying to process everything we had just been told. I text my mum to tell her how we had got one, I was so broken inside I couldn’t physically talk to anyone about it.
This was all so much to take in, with pregnancy hormones already getting the better of me and now this I decided to sign myself off from work for a week to process everything.