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

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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.

The one about the Wikkelkinderen…

I hinted a while back that I was working on a story that was a slight deviation from my usual style of writing – and it was published today on Amsterdam Mamas – a website dedicated to parenting in the Netherlands.

The story was my story, intertwined with a fascinating story behind a painting in a castle, not too far from my house.  However, the painting is significant to me. Continue reading The one about the Wikkelkinderen…

The one about the vaguebooking LUMC post

I kind of vaguebooked yesterday about what was going on and why I was at the LUMC, and also to my friends who mentioned that I didn’t sound ok with what happened yesterday – I want to reassure you I am fine. Thank you for the messages and the love xx

Continue reading The one about the vaguebooking LUMC post