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Selective Reduction: A Letter From A Parent.

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A post from a parent who went down the path of selective reduction.

This is not is a challenge to your story, or your choice, it’s just my story. It’s taken me 18mths to build up the courage to put my name to this. 

I turned to online groups in 2020 when our darling baby B, was diagnosed with sIUGR around the 19th week of pregnancy.  Our MFM and care team presented all options and of course we fought hard for both our girls. Over the next few weeks we had twice-weekly monitoring, at this point we had a 37% discordance (growing)and she was <1st%ile.

I, of course, spent every minute after our diagnosis researching (both in groups like this, and in academic papers) what I could do to ‘help’. I consumed the protein. I did the bedrest. I drank the water. I believed the good thoughts. We had the prayers. 

Things took a turn for the worse when we saw consistent reverse flow in the DV starting in week 23. Our care team explained she was in “demise”, that her death was “imminent” and that by her dying – and yes, there were signs of this – this *could* have catastrophic outcomes for her sister, “P”. We consulted not only our care team, but teams at other hospitals and even internationally. We heard repeated variations of the same message. I held onto hope. The hope one gets from stories on Facebook groups.

I wanted to make it to the elusive “viability” 24 weeks. Every minute that we let pass to research and develop a plan of action was a minute she could have died spontaneously, radically altering P’s life. But we fought. 

What changed things for us was asking to speak to NICU doctors about life for the girls (BOTH girls) after delivery *if* we made it to 24weeks and delivered. We heard about their likely NICU journey, the risks, the benefits and then importantly, life beyond that. We asked about the outcomes of cases similar to ours (OUR discordance, our blood flow, our cord supply/ placement issues, our gestation, our duration of sIUGR – these are all so unique in each case, and they each make a big difference to likely outcomes). What we heard was heartbreaking. 

We made the ‘decision’ to go through with a cord occlusion at 23+5. Not all sIGUR stories have a good outcome.

I put ‘decision’ in speech marks because of course, no one on the planet would ever “choose” this course of action. A grief counsellor we spoke to aptly said the English language just doesn’t have a word for “a forward motion under duress’. That’s what it was.

Please know, I’m not sharing this to scare anyone or because I’m bitter with my outcome. To my core, I believe our ‘decision’ was the kindest, best, right one for our family and for all parties; my partner and I, and BOTH girls. Why am I sharing this now? Because I’ve lurked online in silence for 18 months and there are a few things that I think are quite misleading onine.

There is incredibly limited, questionable evidence protein does anything. No evidence excess water does anything. Few cases where bed rest improves sIUGR (it may prevent early labour though). sIUGR is caused by different things. Knowing what is causing your sIUGR could help. Maybe.

In our case, she had a velamentous, two-vessel cord. When she was born, the midwives were unable to see where her cord actually attached to the placenta. I could have consumed all the protein/ water but it had no way of getting to her. 

There is no blanket rule for when viability is. It depends on each case and even in one pregnancy, each twin will have a different age of viability.

Please (please please please please please please) be considerate in your language. Avoid saying you “couldn’t choose one” – that’s not what we did. Far from it. No mother/ father ever could. 

Where you can, avoid saying you want/ed both so couldn’t do a selective reduction- of course!! We all want both. I still do. My heart breaks daily for this. I would give my left arm…my life…to have both. If she had been a singleton, we very likely would have continued the pregnancy and birthed her at 24 weeks… but to us, in our choice, it wasn’t just about her. There were two children who we had to consider.

Be mindful that the doctors and hospitals are on your team. They’re not the enemy. They’re not suggesting selective reduction to be cruel or heartless or out of laziness/ cost-saving. It’s one option of many they will present and they’re doing it from a scientific point of view (based on data and the best knowledge of the time) – based on ALL outcomes. They will respect your decision; they’re not hoping you do a selective-reduction. 

Please be aware there’s a confirmation and survivor bias online. People who don’t have happy outcomes shy away from speaking up, leave the group because it’s too hard, or join other groups. They’re in groups for people who choose selective reduction (it exists!), pages for twins whose sibling has died, groups of parents of children with severe medical conditions/ disabilities, groups about premmie babies, groups for parents of twins who have significantly different health outcomes to one another, bereaved mothers groups for those who’ve lost both, etc. If you track specific members’ comments and movements across time you can actually see this.

That means, if you’re looking for likely outcomes in sIUGR cases similar to your own, you’re likely to only find the best-case scenarios. But there are silent or vanished families today who once were online and are now living with one or both of their twins having died, or with profound, life-limiting, disabilities – I’ve spoken to some. It’s not comfortable to hear but it’s the truth. (And no, I’m not being ableist, I’m not suggesting their disabled twins’ lives are of any less value; I just want to highlight that it does happen, more often than one would think and it’s something you need to consider for your family).

My heart genuinely soars for those of you who had the best-case scenario. But your best-case scenario is a result of good medical care and a bit of luck (maybe prayers if that’s your thing). It’s not because you defied the doctors’ advice. It’s not because your babies were more loved/ wanted than anyone’s who is considering a selective reduction. It’s luck – and everyone of us here could have had very different outcomes had we birthed a different day, had a slightly different positioned placenta, not had XYZ pre-existing medical condition etc. 

Please, look to the medical journals, the data (!), go to those other online groups, ask your care team about similar case outcomes in your area rather than rely on the anecdotes in one group.

Ultimately, it’s all a roll of the dice. I’m friends with a family I met online, who made the right choice for their family, – they chose not to have a selective reduction – but tragically their non-sIUGR twin died in NICU from an infection. Their little twin is still battling. We made the right choice for our family, the one we could live with. They made the right choice for their family, the one they could live with. You just don’t know how the chips will fall.  As our favorite MFM said to us in the midst of our heartache, there is no opt-out. Not making a choice is still a choice and we have to live with the outcomes. 

The support of online groups is so so so valuable. I connected with people on here in 2020 that I’m still in regular contact and have seen me through some of my toughest days. But some of the advice on here is just not based on the evidence. And I just can’t believe that in the 2 years I’ve been online, I’m yet to see someone else say they had to go down the path of a selective reduction. It’s not possible that no one has. 

There’s an underlying theme of if you hope/ pray/ take the risks/ do XYZ it will all work out in the end. That’s the general message of most comments on the posts. The truth is, sometimes it does. Sometimes it doesn’t. 

Please believe I’m not advocating for selective reduction. Absolutely not!! It’s awesome to me that most of us in groups have a good outcome (as do most sIUGR cases too!!), but there’s definitely a stigma against selective reduction that has been fostered through this line of thinking. It’s one of many ‘choices’ available. It’s right for some families. No one wants it. In the same way that I would never judge you for choosing to birth your healthy twin early, please don’t judge others (including me) for their choice regarding their twins’ welfare. Both are ethically questionable, so don’t shut down the conversation.

 Much love to everyone in this shitty luck of the draw situation. It’s just not fair x

Reproduced with permission from the author. TAPS Support would like to acknowledge her honesty and candor on this topic.

ORPHA… What?

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In January this year, Twin Anemia Polycythemia Sequence (TAPS) and 2 other diseases affecting monochorionic twins were granted an ORPHA Code and listed in the Orphanet database of rare diseases. But what does it mean that there’s an ORPHA code for TAPS?

 It’s an exciting step because it means that now, TAPS is officially listed as a rare disease and will open a lot of doors in relation to research and international collaborations and make it easier to collect data for research. 

But why is this important, and how will it help research? Let’s talk about it!

Continue reading “ORPHA… What?”

Kitty & Willow: How A Diagnosis Changes Everything.

kitty and willow

After coming out of NICU with my twin girls in one piece but my mental health in tatters, I looked forward to a life for my twins with tentative positivity. I hoped that the white knuckle ride of multiple pregnancy was behind me. I avoided all the twin and multiples groups I had joined because, in all honesty, I was afraid of what I would read and the trauma it would bring up in me.

This is my story of how advocating for a different diagnosis helped me to heal.

Continue reading “Kitty & Willow: How A Diagnosis Changes Everything.”