Miracle for Teddy's special heart

Hi I’m Teddy I was born on the 20/11/2021 and I have some very rare heart conditions. I couldn’t drink from a baby bottle as I didn’t know how to actually suck. So for the first few days I was fed from a cup but then from 4 days old they decided to put a NG (nasogastric tube) up into my nose and down into my tummy as when I was trying to drink because of my heart conditions my work of breathing was getting to much and I was burning to many calories. So

from 4 days old I was fed milk via this tube. After being in hospital for 4 days having all the extra checks and heart monitoring being done they said I could go home. We made it home for a few days and then I started going really down hill. This is when I underwent open heart surgery at 3 weeks old.

On the 15/12/2021 I had a banding around my pulmonary artery to stop allowing so much blood to flow to my lungs. I had a very hard recovery as after my surgery I then got something called enterovirus which is basically just a cold. I was in hospital recovering for a month after my surgery so I was in hospital for Christmas.

I finally made it home for New Year’s Eve, after this I was in and out of hospital regular staying for a few nights at a time, sometimes a few weeks at a time because my work of breathing, low oxygen, catching different viruses and finding it very hard to recover. I was assessed for my swallow as the SALT (Speech and language therapy) team said I had a unsafe swallow so I couldn’t be weaned on to baby food and with just having special baby milk I wasn’t gaining the weight that I was supposed to be gaining. I was very hungry and wanting to eat and my mum and dad worked with me and slowly but surely I was making very good progress with different foods and textures.

We are currently still working towards the food and different textures etc but I am doing very well. I have still currently got the NG tube but now I am doing very well with my eating and only have to have 1 feed on a night time and I’m working towards eating 3 meals a day. We also have worked towards trying to manage my breathing whilst drinking liquid and I am also doing very well with this.

We are now on the 07/03/2023 and I had to go for a camera down my throat because previously the hospital had to do a CT scan and had seen that 1 of my airways looked “floppy”. To allow this to take place I had to have a special anaesthetist to put me to sleep as I have very rare heart conditions. They did the camera down the throat and found that my main airway is “narrow” and my left airway is fully closed but when they push the camera through it opens up on the other side. They kept me in and put me on something called a CPAP which normalizes breathing by delivering pressurized air and gives me a break when I sleep at night time.

All the doctors have spoken and said they have never seen anything like this before and the only doctor to have seen this in the UK is at Great Ormond Street Hospital.

GOSH and the team have now had a meeting and decided that this surgery will not be happening as it is too high of a risk and Teddy will not make it through the operation.. the doctors have mentioned a tracheotomy but they aren’t having another meeting now until 20/04/23.

On the 05/06/23 they decided that I needed my next surgery

which was to cut one of my main arteries and redirect this straight to my lung to try and improve the blood flow to my lungs. This operation went very well but once again after my operation I got a lung infection which meant I had to stay in hospital for nearly 8 months which was very hard because the hospital wouldn’t allow my little sister to come and stay over because they couldn’t give us a room for her to stay in which was very difficult especially for my mum & dad as they had been in hospital with me.

Since this I have been learning to eat and have done very well a lot has held me back because of operations etc but now I am fully on normal food and are doing amazing sometimes It does get a little much and I do choke but I am doing amazing.

They are planning my next operation but we have not got a date yet we are now on the 07/05/24 and I have a appointment with my cardiologist this week to see what is going on next and to see when my next open heart surgery will be.

I am trying to raise money for my family to help to support me while they are with me in hospital, also to be able to afford fuel to be able to see my 3 year old sister because we live over 1 hour away from Leicester where I have my open heart surgeries. Also for my sister esme to be able to come over and stay over in a hotel as there’s nothing better than family time and this would make me a very happy little boy, and also to help out with food whilst in hospital because they don’t feed you whilst you are in hospital and it is very expensive especially when we are in there for as long as we are. Hopefully also we will be able to raise enough money to be able to take me on holiday before my next open heart surgery because we never know what could happen and I may end up with a tracheotomy which will totally change my life all together.

If anyone would like to ask any questions about my journey or my conditions PLEASE feel free to message.

THANKYOU TO EVERYONE WHO HAS DONATED WITHOUT YOU THIS WOULDNT OF BEEN POSSIBLE ❤️