TAPS diagnosis is done one of 2 ways – before, or after birth. At the moment, a lot of cases are diagnosed after birth, because MCA Dopplers are still not mandatory, and a lot of professionals refuse to do them yet. The evidence is there that they save lives, we have treatment protocols, and yet we’re still fighting to have them as part of our routine care. Frustrating, right?
If you haven’t read our breakdown on diagnosis yet – pop over here to get a good idea of what the criteria are, and check out the staging systems. In this blog, we’re going to talk about ways to overcome objections from your care team, and also ways to advocate for care, but also some jargon that you might encounter broken down.
Diagnosis before birth
If your MFM is already doing MCA Dopplers
and recording these from 16 weeks, you’re halfway in the struggle already. What we can suggest is getting a copy of your
records at each appointment, and putting them into a binder. You have it always
to refer to, and can also check your own readings here. As long as
everyone is sitting around the 1 mark for MoM, everything is going ok. Remember though, if the readings start to
move apart this can be a sign of TAPS, or they move above 1.5 or below 1
together, this can be indications of something else going on.
But we already know that it’s a struggle to get MCA Dopplers. So, what can you do? We encourage you to have an open, honest discussion with your doctor about why they object. If their reasoning is that there is an unclear treatment protocol, we suggest referring them to this paper – Twin Anemia Polycythemia Sequence: Current Views on Pathogenesis, Diagnostic Criteria, Perinatal Management, and Outcome., by Tollenaar et al. You can also direct them to the website of The TAPS Trial, which is an international clinical trial currently underway.
If they object simply because the recommendations aren’t there to do MCA Dopplers, then this paper might help you as well – Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States by Nicholas et al.
We can also suggest talking about the recent findings with long term effects here – High risk of long‐term impairment in donor twins with spontaneous twin anemia polycythemia sequence by Tollenaar et al.
It’s not about being aggressive and demanding they do MCA Dopplers. That’s not going to get you anywhere. Instead, it’s about you being calm, collected and informed. And if it all doesn’t work, maybe it’s time to find a new care team.
So to summarize:
- There are treatments for TAPS.
- TAPS is a serious disease with very real long term effects.
- You are entitled to MCA Dopplers as part of your treatment plan, and you need to advocate for them.
And let’s move to the next section –
Diagnosis after birth.
Hopefully, you’ve got an awesome team in place who are actually doing MCA dopplers and are TAPS aware.
This isn’t always the case, so it’s important also to know what tests to advocate for after birth.
If your babies are born with a significant color difference, you need to insist that your placenta is sent for pathology to check for tiny connections (less than 1 millimeter thick), as well as ask for a complete blood count to check the hemoglobin and reticulocytes for each baby.
After birth, the recipient twin may need some of their blood taken out, and exchanged for saline to “thin it out”. Your donor twin may also need a blood transfusion or 2, depending on the level of anemia.
It’s important here to remember that you need to get the right diagnosis after birth. There are a couple of different things that cause a color difference, and they all have different treatment priorities.
So, to summarise here – get it written into your notes, put it in your birth plan. If your monochorionic twins are born with a significant color difference – you want both babies reticulocytes and hemoglobin recorded. You also need to insist on your placenta being sent for pathology, and dye injected to check for tiny connections less than 1 millimeter thick.
It’s time we as parents got proactive and insisted on getting the minimum standard of care we deserve.
- TAPS is treatable.
- TAPS can be detected via MCA dopplers
- If we know TAPS is there before birth, we can treat it, or be prepared to treat it.
- We need to speak up and ask for the testing.