27th October 2015

A very special weekend

Halloween weekend sees us going away to meet some new (ish) friends. Most of you will know when Bubs was born he was diagnosed with congenital Hypothyroidism. It was later confirmed he had no thyroid at all by a scan at Addenbrooks.

I had never heard of this before, didn’t have a clue what the thyroid was for or what it did and had no idea about anything to do with this condition. Top of my list was to go onto Google and find out information, Google has stacks of information about everything, right? Hummm no not in this case, there really wasn’t a lot of information at all. There was even less to read on forums from ‘real people’ So what you want is to speak to ‘real people’ who are also experiencing this and going through the same thing. There were many websites that I could read telling me about the condition however I got no comfort from this. I wanted to know my Little baby was going to be OK. I wanted to know he was going to grow up and be normal and lead a normal life. I’m not asking if he is going to be amazingly intelligent and go to uni and be a highly paid professional. All I wanted was to read he’s going to be OK living with this condition.

I decided to look on Facebook for any groups and its then when I came across a group for parents of children with Congenital Hypothyroidism. I joined but soon realised a lot of the people in the group were from America. We chatted a lot and there were a lot of parents who had children aged 8, 9, 10 + and they all told me about their experiences. Most very positive, in fact all were extremely positive. I used to go on this group everyday and one day I met a woman called Melissa. I was so happy, she lived in the UK, she had a baby born on the same day as Bubs and she had a baby with the same condition as Bubs. We only lived 3 hours apart and I knew from then there was a massive possibility we could meet up.

We chatted for a long time on Facebook and ended up swapping numbers after a few months. Now I don’t mean this to sound horrible, however I am sure Melissa will totally agree. I wish we had never met each other as that would mean our babies didn’t have CH (congenital hypothyroidism) and everyone wants their babies to be 100% healthy and born OK. We have however met through this and I am extremely grateful. She’s always there for a chat, we chat a few times a week and Halloween we are all meeting up. It is so nice to speak to some who knows what you are going through, we talk about when our babies have blood tests and what strength medication they are on and if their dose has stayed the same after each blood test, as well as normal every day chit chat. It is so nice to know that you can turn to someone who understands. It’s very hard for someone to understand if they are not going through this.

I now however a year on feel like we are not really “going through anything’ its a normal way of life for us now. Bubs has his medication every morning and that’s it forgotten about until the next day. We have been so lucky and managed to land ourselves a great weekend away with Travelodge in return for a review of our weekend. We are travelling down to Bournemouth on Friday 30th and coming home on the 31st. We are all looking forward to meeting up. I shall write a post after meeting up to let you all know how it goes.

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14 responses to “A very special weekend”

  1. oxsian says:

    Its good to see that you haven’t really had much trouble with it and it hasnt affected you as a family as bad as it could have! I hope you have a lovely time in the travelodge, its always a nice treat to get away for the weekend! 🙂

  2. Its so good to have a support network of people who are going through something similar when something like this happens. I am glad you found Melissa and it sounds like you two have a good friendship that goes beyond the condition. Have a fab time at the weekend! 🙂

  3. Angela Milnes says:

    My husband was born without a thyroid and although he is on medication, he is tired all the time and unable to work. I’m glad your son is doing well and hope you enjoy your lovely weekend away!

    Angela x

  4. Laura says:

    WOW. That sounds quite ‘meant to be’. What are the chances of another little treasure being born the same day, near the same town with the same condition. It’s like a blessing in disguise as you now have someone there with the exact support you need. Best of luck on your journey x

  5. Ana De Jesus says:

    I hope you have a lovely time at the Travelodge you deserve it after everything you have been through and could you explain what symptoms are associated with the syndrome.? I have never heard of it before.

    • Hi Hun, I knew nothing about it before hand I’m now an expert he he! So when a baby is first born if they don’t take their medication then they will not develop correctly, brain will not grow etc. The thyroid controls everything so from keeping his heart in a constant rhythm, controlling body temperature, controlling sweeting and the oils in your skin. The thyroid is referred to as the engine of the body. The medication he has to take is Exactly what the thyroid produces just he has to take it in liquid form rather than the thyroid producing it its self. There is never any chance of the body becoming used to the medication as it is the exact same as what the thyroid naturally produces. When he grows older and is fully developed if he does not take his medication then he will be very tired. It is still essential he takes his meds however it wont be as essential as it is now whilst he is a baby. xx

  6. It is great that although there wasn’t much information on the internet, you were able to meet someone who is not to far away. I can only imagine how great a support you have been for each other. Have a great time away 🙂 x

  7. Zoe Alicia says:

    I’m so glad you found support from families who’ve been through the same. It goes to show social media isn’t all bad – no matter what the media try to say x

  8. Ohhh the powers of Facebook 🙂 Facebook can be a wonderful thing. I am so glad you have a friend who understands what you and your baby are going through, it sounds like you have a real friendship there! HAve a lovely time in Bourmouth this weekend, from what I’ve seen and heard of Bourmouth, it’s a beautiful part of the country! I look forward to hearing about your trip away 🙂 xx

  9. bericebaby says:

    I remember when I was pregnant I was in a Facebook due date group with women from all over the world. I was also once told Google is not your friend lol
    Glad that you have that community to turn too. As much as people knock the internet, it is actually an amazing place.
    Ive never head of Congenital Hypothyroidism before. Thanks for sharing hun
    Charlotte x

  10. It’s great that you’ve got somebody in the same country who knows what you’re dealing with and can relate to what your worries were! I bet it made you feel a lot better about it all, glad he’s doing fine too. Xx

  11. I know you feel sad that you met under sad circumstances but having someone else who can relate can help when you are down and under pressure.Have a great weekend away!

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