The day we found out our newborn had congenital hypothyroidism

 

Following a planned Caesarean and two nights in the hospital. 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 four and Little Man was super excited to have a new baby brother. So far all was going really well.

 

When Bubs was five-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 the hospital phoned two days later. 

 

Doug (my other half) had just taken Little Man to nursery and my mobile rang - a call that no one ever wants to receive awaited me. When I answered my phone a lady asked if I was Rachel and I said yes. She then 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; I had no idea what they tested for so I didn't have a clue 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 while looking at my newborn baby wondering what was wrong with him. I threw on some clothes, half did my make-up, sorted out Bubs a bottle and was ready for when Doug got back.

 

We rushed to the hospital and were taken into a room with a paediatric consultant who specialised in paediatric thyroid problems. At the time, 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, but 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 it had all 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 where we were told what 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 four days of waiting, we 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’.

 

A couple of side effects with congenital hypothyroidism include prolonged jaundice and feeding difficulties. 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.

 

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 have 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 four 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 which 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 so strange because the two of them seem to hit all of the same milestones at the exact same point.

 

Bubs is now 17-months-old and I rarely think about his condition. I give him his medication first thing in the morning and that's 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.

 

Rachel blogs about her life at Blogging Mummy.