I’m new to this whole blogging thing and don’t really know where to start. So maybe the beginning would be a good start.
So really my story starts with the decision to have a second child something I always said I never wanted until I changed my mind. I had one son already and didn’t want him to grow up being an only child so we tried for a baby. I guess we were lucky in the fact it didn’t take long to conceive. At my week 12 scan everything was fine it came as a relief as a family member found at her 12 week scan the baby wasn’t progressing it was devastating. So thank god everything was ok with my baby. I had a gender scan at 16 weeks and found out I was carrying another boy. 20 weeks scan came along and everything was fine. So skip a few months and get to the birth.
I had my baby boy by emergency c section he was born at nearly 7pm as far as the doctors could tell he was born healthily.
The doctors came the following morning to do all the routine newborn checks it was then they heard the heart murmur. Apparently it’s quite common and mostly goes away after 24 hours except my little ones didn’t. They came back the next day heart murmur still present they then came a few hours later to do an ecg It was then decided they woud do an echo. Then came the diagnosis Tetralogy of fallot except I was so distraught I didn’t take any info in just “something wrong with his heart” we were allowed to go home luckily as they weren’t sure we would be allowed. I was told immediately that if there were any problems overnight to ring 999.
No problems occurred and the midwives came to check us both over Saturday morning the day after we got home I had to explain his diagnosis as best I could. We had to have a community nurse come once a week to check his oxygen sats and a health visitor come. He had to be weighed on a weekly basis as cardiac babies can fail to thrive. Not a problem my boy had he gained weight nicely, had no blue episodes he was as if he was a normal healthy baby. I was convinced they got it wrong.
At 4 weeks old he had his first appointment with a cardiologist I was convinced that it was all ok and he would be discharged but I was wrong. They explained in more detail his diagnosis
Tetralogy of Fallot (TOF).
A combo of 4 defects that cause oxygen-poor blood to circulate the body, which can cause the child to look blue, or called “blue baby”. The 4 defects include: pulmonary valve stenosis(valve is too small), ventricular septal defect (hole between lower two chambers), overriding aorta (aorta is shifted and receives blood from both lower chambers), and right ventricular hypertrophy (right ventricle muscle is enlarged).
This defect requires surgery and is sometimes accompanied by a genetic disorder such as DiGeorge or Down Syndrome.
There is no cure for this. Children with TOF will require life long follow up. Luckily he doesn’t have the DiGeorge or Downs as he had the genetic testing.
It completely threw me I had spent 4 weeks thinking everything was fine but he wasn’t. He had monthly cardiology appointments and weekly sats checks and got weighed weekly everything was fine in fact he gained weight like any other normal healthy baby would. He never dipped. He did the exact opposite of what the doctors said to expect. I was devestated beyond words it was incredibly difficult to take all the info on board. Open heart surgery at around 6 months old.