Mini Man was born by planned c-section at 34 weeks after not such a good pregnancy with grade 4 placental previa. He was a massive 4lb 9oz which is pretty good for a 34 weeker (my 31 weeker had been 2lb 9oz).
However, he was a very sleepy baby who didn't want to feed and didn't tolerate his feeds well. Initially there was little concern about this as apparently 34 weeks is not the best gestation to be born at. At this stage in a babies development, everything vital has developed and the baby is gearing up to the outside world. His main concern at 34 weeks is growing and putting weight on so in effect all vital systems go into low maintenance mode to allow these 2 things to happen. As a result a baby born at 34 -35 weeks can really struggle with the world and can be in a worse condition than say a 32 weeker. So his sleepiness and lack of interest in feeding was initially put down to his gestation.
When his oxygen requirements started going up though and he rapidly started losing weight further investigations were performed. At 1 week old we were given the news that our baby had a congenital heart condition known as a VSD - ventricular septal defect. The visiting cardiologist from the Royal Brompton told us the VSD - basically a hole in the heart was large and may require surgery. It was a lot to take in and it had nothing to do with being premature.
Many babies are born with holes in their hearts. There are 3 main types - a PDA (Patent ductus arteriosus). This is caused when the duct (vessel) which carried blood from one side of the heart to the other before the baby is born remains open. Once a baby is born and starts using his lungs, the duct closes spontaneously. Often is does not fully close at birth however can quickly resolve itself or be resolved with a short course of medication. It is quite common in premature babies and can in some cases require surgery. Then there is an ASD - atrial septal disorder and a VSD - ventricular spetal disorder.
Mini Man had a large VSD. We didn't really know what this meant, how it would effect him. He was losing weight rapidly and did nothing but feed, but he only took an ounce or so before he was too tired and would be asleep again. I preserved for 3 weeks with the breast feeding but when he was labelled failure to thrive, we agreed his health was the most important and he was put onto high calorie prescription milk (infatrini), steroids and 2 different types of diuretics as although he had fallen over 2 centiles in his weight he was also retaining water. The steroids and the diuretics help ease the amount of work his little heart was trying to do. He was officially declared to be in heart failure and stayed that way for 18 months.
Over the course of Mini Man's first year, he had several readmissions for chest infections, he had 7 perforated ear drums due to infections, he was resistant to penicillin by 6 months old as he had had so many courses. Until the age of 2 Mini Man was on a daily antibiotic to keep all the chest and ear infections at bay. At the time I didn't realise how ill my baby was. The words heart failure no longer scared us, we lived with it and almost forgot it was there. The daily antibiotic, the steroids, the diuretics and then the domperidone, ranitidine, and gaviscon for reflux were normal to us. I look back at photos though and see a grey baby.
Three times we travelled to the Royal Brompton for a pre- heart surgery assessment and 3 times they decided there might of been a slight improvement in the size of his hole. The first time we were re-seen a month later, told actually he did need surgery and to book another pre-op assessment, Off we trotted again to the Royal Brompton, had a whole day of tests and seeing people to be told again at the end of it, that infact there maybe was an improvement and to see the cardiologist in another month. Which we did and repeated the same thing. However after this third time of maybe seeing an improvement there really was one and from 9 months old, the hole began to close. By the age of 2 the diuretics, the steroids and the daily antibiotic stopped. However Mini Man didn't talk until he was 30 months, he didn't chew any form of food until he was 16 months and it was all due to tiredness.
At the age of 4, Mini Man's cardiologist told us the hole was small enough for them to be no longer concerned, but there was a problem now with his tricupsid and aortic valve. The cardiologist explained as the hole had repaired itself it had pulled the tissue from near the values towards itself and therefore pulled the valve open slightly. This now meant that there was a minor back flow of blood through these value. This is known as value regurgitation or valve leakage which can be mild, moderate or severe but will never repair itself and will either remain the same or get worse very slowly over time. When it is severe heart surgery is required. Mini Man was only showing signs of mild regurgitation but at some point in his life, most likely when he is 60 or something, he will require surgery to his heart value and until that day we would just need a yearly check up. After 4 years of 6 weekly check up's, the longest period being 3 monthly, this was music to our ears and we were happy. Valve leakage has no effect on his life and if he hadn't of had the hole, its the kind of thing that often goes undetected.
At the age of 5 Mini Man had his yearly check up but with a new cardiologist in Leeds due to us moving. Leeds has a very good heart unit so I was more than happy to be referred there. Mini Man was very naughty though the day of his check up and would not lie still for the cardiologist and did nothing but mess around. The cardiologist was less than pleased. The cardiologist declared there was nothing wrong with Mini Man's heart and he was happy to discharge us. I was very confused after all out last cardiologist who we knew well, really liked and trusted had told us he needed yearly check ups for the rest of his life, had leaky valves and would at some point need surgery. This new cardiologist who made no bones about being cross with Mini Man for messing around and had little patience, was suddenly telling us there were no leaky valves and we never need be seen again. I questioned it which did not go down well, he was quite shirty with me and told me he knew what he had seen and there was no evidence of anything being wrong with the valves or heart. I still questioned though as it was very different to what we were told the previous year, and in the end we were begrudgingly offered another appointment for a final check up when Mini Man is 8, as it is hoped he will lie still enough for a good examination (the cardiologist did admit Mini man had been so active on the bed he might not of had a full view). He did make it clear we were only getting this extra appointment to put my mind at rest. I have been more than happy with waiting 3 years as Mini Man is healthy, he is thriving and despite his rough start in life is never ill, so I would only feel the need to demand to be seen earlier if he suddenly started getting tired or looked grey again. In hind sight I do wonder if we should of pushed for a 2nd opinion but as he is not ill I guess we felt he could wait. In some respects I wish we could return to the Royal Brompton and get a 2nd opinion there.
As an aside the left side of the heart is more muscular and stronger as it has to pump the blood right the way round the body while the right side only has to pump it a short distance to the lungs. The heart is actually quite central in the chest cavity but the heart beat can be felt strongest on the left side due to the left side being stronger.
So V has given you a biology lesson in the heart!
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