The decision to deliver Freddie was made by doctors at Nottingham City hospital when I went in because I had a small bleed. The bleed was considered normal because my twenty week scan had shown that my placenta was low lying. However when they started checking how the baby was, the monitor was showing a heart rate of well over 200. After a scan confirmed that the baby's heart rate was beating at double the speed it should be I was told they were going to deliver by emergency cesarean.
When Freddie was born he was whisked out of the room by doctors. We were able to see him after the surgery and could see that his heart rate was between 210-220 most of the time. After a couple of hours on the ward a doctor came to see us and we could see in his face straight away that it was not good news. He explained that Freddie was very ill, his heart was beating very fast and an x ray of his lungs showed that they had not developed enough. He said that it was going to be very tough for them to make him better and that we had a very tough long journey ahead of us. Words can't really express what Jon and I were going through at that time.
On the 22nd August there was a glimmer of hope from the doctors who explained that they needed to give Freddie a treatment to correct the pace of his heart. This involved using a defibrillator to give his heart a small shock. This was a success and his heart began to beat at a normal pace.
There have been a number of other medical issues with Freddie involving his lungs, kidney's, liver, blood pressure and excess fluid to name but a few. Some of these were due to/made worse by him being premature some to his heart issues.
After the doctors had sorted the pace of Freddie's heart they told us they still weren't convinced that there wasn't another problem. They were unable to feel the pulse in Freddie's legs and one doctor did suggest that one of the valves in Freddie's heart could be narrow. When a scan was performed by the specialist from Glenfield hospital it was thought that the pulse in his legs couldn't be felt because of all the fluid retention. It was thought that because his heart had been beating at double the pace his blood wasn't being pumped properly around his body and his heart needed time to recover.
Freddie came off his ventilator on the 28th August and from then on generally progressed quite rapidly.
This was the first time we saw Freddie's face properly. Special moment.
Up until the 9th September everything with Freddie seemed to be going in the right direction. I went with him to the QMC on the 9th for an ultrasound scan on his heart to see how it was recovering. It was during this scan that the specialist discovered that Freddie had a narrow aorta and would need surgery on his heart. The next few hours were chaos, we were at QMC waiting to see if Freddie could go straight to Glenfield in his ambulance. We had to go back to city because they didn't know if there was space at Glenfield. After not knowing what was happening for a couple of hours they got the OK from Glenfield and he was transported there with us not far behind. Its fair to say it was not a pleasant day.
It was explained to us that the reason his heart problem was not picked up originally was because of his size and also because the problem he had already had with the pace of his heart.
Freddie has congenital heart disease which is an abnormality of the heart that developed in the womb. The abnormality with Freddie's heart is called coarctation of the aorta. There is a narrowing in Freddie's aorta which prevents the blood from circulating normally in the lower half of his body. Freddie also has a small hole in his heart but apparently this is very common and does not need any treatment at the moment. His heart structure is also slightly different to a normal heart which the surgeon explained would not be a problem except that it might obstruct part of the surgery that needs to be performed. This should not be a problem though because there are two different types of methods of correcting the aorta and the surgeon is happy to perform either.
To not go into too much unnecessary detail the surgeon will cut out the narrowed part of the aorta and sew the ends back together.
We have been advised that most children with repaired coarctation of the aorta go on to lead normal, active lives. Freddie with have to have checks at a specialist heart centre for the rest of his life which on the scale of things is nothing if it means we get a happy healthy little boy.
Anyhoo, I'm off to get some sleep.
I just want to say how amazing all of the doctors, nurses and staff with the NHS have been at all of the hospitals Freddie has been at. The work these people do is absolutely amazing and they deserve so much more credit not to mention money for what they do. Not only did the doctors who we got to see regularly at the City hospital astound us with their ability but they always seemed so caring and passionate about Freddie and sensitive to our emotions.
xx
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