After being in hospital for 2 nights after my planned c-section we were all very happy to finally be at home with our brand new baby. I was super excited to start our lives as a family of 4 and Little Man was super excited to have a new baby brother and all was going really well.
When Bubs was 5 days old we took him for his heel prick test and in all honesty I had no idea what they tested for. That was until 2 days later we got a call from the hospital.
Doug had just taken Little Man to nursery and my mobile rang, a call that no one ever wants to receive awaited me. I answered my phone having no idea who it was on the other end. A lady asked if I was Rachel and I said yes, she went on to say that I needed to take Bubs to the hospital straight away because something had come up on the heel prick. I started to panic and I could feel my body starting to panic, I had no idea what they tested for so had no idea what could be wrong. I remember crying down the phone and asking what it was they had picked up. The lady on the phone was a secretary who really had no idea.
I called Doug in such a panic, crying down the phone whilst looking at my newborn baby wondering what was wrong with him. Wondering if he was going to be OK, every thought was going through my mind. I threw on some clothes, half did my make up, sorted out Bubs a bottle and was ready for when Doug got back.
As soon as he was back we rushed to the hospital and was taken into a room with a consultant. This is where I was expecting my world to fall apart. The consultant explained he was a paediatric consultant who specialised in paediatric thyroid problems. I had no idea what the thyroid was or what it did.
The consultant explained that from the heel prick the TSH levels they test should be less than 10 and Bubs were over 250 which is classed as being off the scale. He went on to explain that this meant Bubs either had a thyroid which wasn’t working at all or he simply didn’t have one at all. The consultant was amazing and asked if we had any questions, he told us to take our time and sit and think if there was anything we needed to know. He advised us this wasn’t going to be a life limiting problem and that Bubs would lead a normal and happy life. After everything had been explained to us and we fully understood everything I remember telling myself over and over again that things could be so much worse.
Bubs had to have a full blood test there and then to double check everything. We were advised that we would be sent to Addenbrooks the next day for a nuclear scan to see if Bubs had a thyroid which wasn’t working or if he just didn’t have one at all. I was so scared at the words ‘nuclear scan’ it sounded so scary. The next day we went off to Addenbrooks and were told all that would happen. They inject radioactive dye into Bubs and if there is a thyroid present then it will soak up the radioactive dye and show up on the scan. If there is no thyroid at all then nothing will show up on the scan. After the worst day of my life and then 4 days of waiting, were were told that he had no thyroid at all. I looked at my tiny newborn baby wondering why it happened to him. There simply is no explanation and no answer out there. It is classed as ‘one of those things’
At Addenbrooks with the cannular in
Having the scan done, Yes Bubs is between the 2 bits where the man is looking
A couple of side effects with the Congenital Hypothyroidism are prolonged Jaundice and feeding difficulties. Bubs had very bad Jaundice and this is due to the fact the body isn’t working without the thyroid. The thyroid is referred to as the engine of the body and it controls body temperature, keeping the heart in a constant rhythm, controlling the bowels and liver to work correctly and much more. His jaundice eventually cleared up totally when he was 8 weeks old.
Although Bubs is going to be on medication everyday for the rest of his life, he will lead a very normal life and do everything any other child can do. When I was having a bad day asking why this happened to my baby, I would tell myself that it could of been so much worse.
Bubs is now doing fantastic, he is hitting all of his milestones and is very cheeky. He has regular blood tests which at the moment are every 4 months. This will eventually go to twice a year once he is older. At the moment whilst he is still growing his medication needs adjusting more, however once he stops growing in adulthood his medication should be more stable.
I have met an amazing friend through a group that I joined for parents of other children going through the same thing. Her Little Girl was born on the same day as Bubs, we met up in the summer and it was lovely. It’s so strange because the two of them seem to hit all of the same milestones at the exact same point.
Bubs meeting a sleepy Baby F and her Mummy
Bubs is now 17 months old and I rarely think about his condition. I give him his medication first thing in the morning and thats it. Things are going great and I couldn’t be happier with the way we were treated by the NHS and continue to be treated. I have a direct number for the consultant who I am able to call anytime if I have any worries or questions. He has always given me the time I needed and I will be forever thankful for that.
The importance of this being picked up on the heel prick is massive. If this was not tested for and then left untreated, irreversible life long damage would be caused. Medication needs to be started as soon as possible and I would urge all parents to please make sure they take there precious little newborns for the heel prick test.