The one about the birthday fundraiser..

At the bottom of this post there are links to a fundraiser.  All proceeds go directly to the TTTS Support Team so that they can continue their amazing work with grieving families. Thank you in advance for your donations!

On the 20th of January, I turn 40.  Crazy, right?  I mean, 40 seems like you should have everything sorted out and be a responsible, mature adult and all that shit.

Seriously, no pressure.  None at all.

Continue reading The one about the birthday fundraiser..

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The one about the difference between TTTS and TAPS

You get so much medical jargon thrown at you when you’re diagnosed with a disease like TTTS and TAPS – and sometimes it’s really hard to process it.  There’s a lot of medical terms and it’s quite overwhelming.  People start talking about DVP’s and MCA’s and cord flow and start talking about amnios and lasers and SFR … it’s confusing and overwhelming.

For the purpose of this post, I will only be referring to identical twins who share a placenta. There are always exceptions to every rule, but the key to this post is simplicity.  So on that note, I am specifically referring the most common denominator – identical twins, sharing a placenta. Continue reading The one about the difference between TTTS and TAPS

The one about TTTS Awareness Month

Hello again! It’s that time of the year where I campaign relentlessly for TTTS and TAPS awareness.  December is a special time of year, where emotions take the better part of me and my passion for spreading awareness increases.

Key Dates for us this month are :

December 1 – the start of TTTS Awareness month.  This year I’ve helped with a campaign for the NVOM, a new challenge as this has been testing my Dutch skills!

December 7 – World TTTS Awareness Day.  I have a lot of respect for Mary Slaman, who has tirelessly campaigned since 1989 and founded the TTTS Foundation from her own experience with this disease.  I would love if everyone who reads my blog would light 2 blue candles on this day to help commemorate the lives of babies lost to both TTTS and TAPS, or wear blue.

December 12 –  Celebrating the 4th birthday of 2 incredible little ladies who defied overwhelming odds to be here today.  Emmy and Tilly are strong, smart and energetic girls who thanks to amazing research and care, are here with us today.   TAPS is the silent killer in the TTTS family – there are no external signs of this disease and can only be suspected on ultrasound.   We are so thankful that we had forward thinking doctors and the LUMC on our case.

December 24 – An amazing day for us.  On this day, our girls were deemed strong enough to move to our local hospital from Leiden.  It’s also Christmas Eve!!

Please, I urge you to make a donation to either your local children’s hospital, or one of the following TTTS charities for Emilie and Mathilde this December.  Follow my facebook page for information coming out in both Dutch and English and share!

  1.  TTTS Support Team – Sending grief packages to parents who lose babies to TTTS.
  2.  The TTTS Foundation
  3.  TTTS Australia
  4. Willem-Alexander Kinderfonds
  5. Your own local children’s hospital fund.