4th March 2016

The Day we Found out our Son had Congenital Hypothyroidism

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

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Having the scan done, Yes Bubs is between the 2 bits where the man is looking

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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

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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.

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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.

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28 responses to “The Day we Found out our Son had Congenital Hypothyroidism”

  1. Sam Kilpatrick says:

    My daughter (my third child) has CH. I too remember the devastation of that call, then a full day spent at GOSH.
    My daughter is almost 4 now. The blood tests are still not much fun but otherwise she is a happy, smiley, normal little girl.
    Much love xx

  2. Zoe Forde says:

    You poor things, I have no idea how scary that must have been for your family. I’m so glad you had someone who was in the same shoes to talk to about it 🙂 x

  3. Mother Under Measure says:

    That must’ve been so scary! It’s mad, the thyroid is something I know nothing about, even after having an overactive thyroid myself during and after pregnancy. I need to educate myself on it I think, I think we all should. Glad it’s not had too much of an impact. X

  4. hijackedbytwins says:

    I remember all three of my children having the heal prick test but if I am completely honest I never really gave it much thought as to what it was for. Now I understand how important it really is. I am pleased to hear that your little man is doing well. He is super cute! x

  5. Michelle robillard says:

    Michellerobilliard@yahoo.co.uk

    It’s always nice to know you are not alone and I can assure you Melissa will be a friend for life

  6. Kim Carberry says:

    Aww! Bless him and you! It’s good that is was picked up near enough straight away….I’m so glad he is doing well. He sounds a lovely little boy x

  7. Oh hope scary for you all! The heal prick test might seem mean but it’s vital! H x

  8. Sarah HP says:

    Oh bless your heart you have been through so much. It is a phone call that everyone dreads with any kind of medical checks. My three kids were all born at Addenbrookes and I’m so grateful for all of the treatment we have received there from such great health professionals.

  9. steph_baybee says:

    Oh thank you for sharing this story with us, he is a cutie! I too didn’t realise what and how important the heel prick test is.

  10. How frightening to have been faced with unfamiliar news so unexpectedly but look at how he’s thriving now! Thank you for sharing your experience.

  11. stephanie says:

    Thank you for sharing your story. I didn’t realise what they tested when they did the heel prick test, or how important it is. He is a little cutie! X

  12. Melissa says:

    I am a CH parent, my boy is now 9 but I still remember that dreaded day, we didn’t have a phone call, we came home after taking our daughter to nursery to a pediatrician knocking on our door, we were told my baby boy was ill and needed urgent treatment and to go to the hospital straight away. We didn’t find out what was wrong until we got there…. worse day of my life!

    • It still affects me when I think back to getting that call and that day of having no idea what was going on. He is now 2 and a half and is doing great, things do get so much easier don’t they. xx

  13. Emma says:

    Hi there,

    We’ve just received the news about our baby boy having this condition- to say I am heartbroken is nothing to compared to how I am feeling. I’m hoping it’s going to get easier as I do feel as though my life has fallen apart. He is the final piece in my family and to have this news has really knocked me. Any advice? Xxx

    • Hey, Thank you so much for reaching out. I am so sorry that you are currently going through this. I am more than happy to speak with you at any point about anything you would like to ask. I understand those first few months are just so hard but just trust me that it does get easier. xx

  14. Bianca says:

    My little girl has been diagnosed with this.
    She’s showing signs of floppiness, bulging fontelle it’s heartbreaking.
    She’s taking her meds fine.
    She’s 3 weeks old today and still only weighs 8lb..
    I am constantly checking her or wondering if she will have any serve damage.. as she has symptoms already
    my life feels shattered!
    Please pray for her..
    I want to believe that this is all reversible but it’s hard when they are diagnosed with such a
    Condition..
    I haven’t ever heard of this before and I have no one to talk to who understands xxx

    • Amber says:

      Hi can I ask how you are getting on now? X

      • Hi,

        He is now 5 years old and doing absolutely perfectly. In fact in to the new year I will do an update possibly on here but more than likely on my Youtube channel, it is sometimes easier to speak to the camera and talk about it rather than typing it all down. My Youtube channel is Blogging Mummy. However he is dining fine. Now issues at all, in fact he is far advanced at school beyond most of his peers, he has no weight problems and is exactly like any other child with a full working thyroid. xx

  15. Emma says:

    Hello. My little boy has just been diagnosed with this and it’s come as a real shock. I’m struggling to figure out how we will cope with it all but I guess over time you just adjust. You just expect them to be ok. His levels were over 300. We started his medicine and I really hope and pray that he just grows up to be a totally normal little boy. It just feels so unfair on him.

    Your blog post has been reassuring to hear from someone that they have a happy and healthy child. Thank you.

    • Amber says:

      Can I ask how you are getting on now? X

      • Emma says:

        He is doing really well. He’s just turned six months and is hitting all the milestones he should do. His levels went down to within normal range within the first month. It was so reassuring to know that it was working, and that it was that quick. He’s just like any other six month old.

        If just seen your comment below, I know it’s such an awful thing to hear that there might be something wrong with your new baby, but I promise you, if your little girl has it, and she takes her medicine she will be just like any other child. The initial shock is awful, but trust me, it gets better and you realise that it’s not as scary as you once thought it was.

        I’m happy to answer any questions you have (if I can!)

        Sending you lots of love. X

  16. Amber says:

    Hi, we have just been given the news our daughter may have this and she has had more blood taken to check. It’s hard to believe as she seems so normal sleeps a lot but she is newborn so sleeping a lot is normal I would think?! Panicking 🙁

    • You don’t need to worry at all, I can assure you that she will be no different to any other child at all. I think I have replied to another comment of yours just now but in the new year I will do an update on my Youtube channel and I will include my son in it. So if you wait a couple of weeks into the new year I will upload a video and try to re assure you. I know at first it is scary BUT I can promise you it isn’t. It doesn’t affect my son in any way what so ever. Don’t like the internet scare you. x

  17. Helen says:

    My little girl has just been diagnosed with this. Thank you for your blog, it’s very reassuring xx

    • Aww no problem at all. I know saying not to panic is easier said than done however I can assure you that everything will be OK. My little boy is doing so well and you just wouldn’t know any different. I am doing an update over on my Youtube channel within the next couple of weeks so head over to Blogging Mummy if you would like to see it xx

  18. BabyMama says:

    Hie all,
    I have a 6 month old baby boy. Where I’m from (Malaw Afruca) , none of these tests are carried out. I’ve been observing my baby and something looks off. I have been reading on some of the symptoms of the condition and I think he might have it. He has a very big frontanel which bulges in, low muscle tone, little concentration and does not turn to sound. I would like to find a way to have him tested for the condition elsewhere. Now my question is : is it not too late to have the test? If not, and the results come positive, is there a chance he might live a normal life after treatment?

    • Hi, Thank you for getting in contact with you.

      First of all these symptoms could be absolutely anything however if you are thinking your son may not have a working thyroid it really is essential you get the test carries out asap. The sooner treatment is started the better the chance they have of leading a normal life. Whilst a baby is developing and and their brain is growing it really is essential that if their thyroid is not working they are medicated. Have you spoke to your doctor about this at all and asked if there is anywhere you can have him tested? xx

  19. Twinmama says:

    Hi,
    I just found out one of my twin baby boy has CH. His numbers were in 200, saw peds endocrinologist and he started him on medication. My LO started his first dose at age of day 7. This whole thing is devastating for me as a mom. I may have read the entires google on this condition and the more I read, more I get worries about his developmental growth. Finding this blog gave me some reassurance that there are other moms just like me and other LO just like mines are dealing with this. Please give us update on how your LO doing. Also, did your LO had bone scan or thyroid scan done, and if so , at what age.

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