The birth and Diagnosis of my son. - Real Mum story on MoM

11 Comments

I gave birth to a beautiful little boy On the 26 of July 2013. My 1st born he was so precious and perfect. Despite being purple on his top half at birth everything was going well, Until I brang him home. The midwife came to do a home visit and Do a prick on my sons foot etc. Later that day I noticed a lot of blood on my sons foot, he Had still been bleeding 8 hours after he had the prick. We put vasoline on it to try clot the blood but nothing worked it was soaking through bandaids etc. We rushed him to the hospital and after hours and hours of waiting a special service from westmead hospital called nets. They inhected a dose of factor 8 into my son and he kept bleeding. So they tried factor 9 and BANG!!!!! he stopped INSTANTLY. come to my surprise my son was diagnosed with Severe Haemophilia Type B. its a 1 in 10,000 chance of getting and its a mutation in the sex genes. Its Genetic and runs in familys, Men suffer and females carry it. Although females can have what we call Von wille brand And Christmas Disease. Im thinking of starting a fundraiser but not sure if it will be successful. My son will have blood transfusions up to 4 times a week for the rest of his life. His doing fine at 10 Months old now

Posted by nurrakaismum, 27th May 2014

11 Comments

- - mum4107 said
  - 29 Jun 2015
    5:38 am
How is your son doing now? Did you manage to start a fundraiser

- - merlin2012 said
  - 18 Jun 2015
    12:02 pm
Thank you very much for you story. I’ve never heard of Haemophilia Type B. Good on you for trying to fund raise. Unfortunately i don’t know where to start, but if you type How to fundraise into Google it may give you some tips. Perhaps it’ll take you to Gofundme (ive heard the name but that’s about it). Good luck

- - tam_watters said
  - 29 May 2015
    10:16 am
A place to start with fundraising might be the websites that you set up a profile on, share the link with others through email and social media & the money is collected for you. They do charge a small percentage but it is a very easy way to fundraise. Just search for Australian fundraising websites. Gofundme is one off the top of my head but there are others. I suggest making a detailed profile so that others understand exactly what the money will be used for. Eg, Detail the amounts of your out of pocket expenses in keeping your son healthy – this makes people feel more confident that their donations will be used appropriately. Also, add photos and anecdotes to create empathy by showing the world what a special beautiful boy you have. Good luck

- - mom113055 said
  - 14 May 2015
    3:38 pm
kool

- - mom113055 said
  - 06 Apr 2015
    11:58 am
it a a great and exellent story

- - nurrakaismum said
  - 05 Jun 2014
    8:12 am
Thank you for taking the time to read my story I don’t know where to start with a fundraiser hey.

- - Emilyypamela said
  - 30 May 2014
    6:37 pm
I think you should do a fundraiser. Good luck with it all. You should be proud of yourself.

- - coppin85 said
  - 30 May 2014
    1:34 pm
that would be so stressful and i think you should do a fundraiser, its worth a try. I wish you all the best

- - pakeko said
  - 29 May 2014
    9:28 pm
what a scary thing to find out, if you can then fundraising and raising awareness is always a great thing. This also means you can offer support to others in your place

- - arcticwynta said
  - 27 May 2014
    7:18 pm
oh the poor little might but thanks for writing about it and making it known. I would have no idea about fundraising but I would look into it if I was you if only to make it more known

- - Kelly said
  - 27 May 2014
    12:41 pm
Thank you for sharing your story with us, as like you i think i would of just panicked so much if i couldn’t of controlled the bleeding to.
Im glad your son is doing so well and even tho he will have to have blood transfusions he will deal with them so well with it having to start from such a young age.
Good luck with the future