Making your MFM your BBFF

MFM BBFF TAPS Support twin anaemia polycythemia sequence testing monochorionic modi twins

Ok, TAPS Support Admin Team … Are you quite ok there? Making my MFM my BBFF? What? Are you into the Christmas “Spirit” early?

(admin note: No, we’re not! We’re just really excited about our latest campaign)

This year we want you to make the resolution to make sure your MFM is your BBFF. So let’s talk about what we mean by this.

What is BBFF?

We all know that a BFF is a Best Friend Forever. Do we really want you to be that close and personal with someone like an MFM? Well, maybe not so you’re braiding each other’s hair and gossiping (although if that’s the relationship you have, why not? ), but rather that you build a trusting, open, and honest relationship during your pregnancy.

You deserve to be looked after, that all the appropriate care is done for your pregnancy, and that most importantly, you are being open and honest with each other about all aspects of your pregnancy. Make them your Best Best Friend For pregnancy.

So how can you do that? We’ve come up with a little mantra for you.

Make your MFM your BBFF

And to do this – at each appointment, they should be checking the Brains, Bladder, Fluid and Flow of each baby, and most importantly, discussing the results with you.

It’s as simple as this – Brain – Bladder – Fluid – Flow or … BBFF. The idea is so awesome that we dedicated an entire webpage to it on this site, and made the checklist downloadable so that you can take it to your first appointment to discuss it.

Let’s talk about the checks you need.

Change the way monochorionic twin pregnancies are handled

We’re pretty focussed on TAPS on this page, but our mission is clear.

To empower all parents of monochorionic twins to advocate for appropriate care backed by the latest research.

TAPS Support Mission Statement

Therefore, everyone deserves to have the standard of care their country’s guidelines suggest. You deserve to not only have the minimum standard of care you’re entitled to but exceptional care. If you want more information on how you can advocate, get in touch with us at hello@tapssupport.com.

Besides, there’s nothing wrong with making friends with your MFM. Building trust is an important part of the doctor/patient relationship, and we want you to have a solid, trusting relationship where you know you’re in good hands.

Let’s talk about long term effects.

long term effects taps twins support

If we had to talk about the most frequently asked questions we get about TAPS, this would have to be one of the most common.

What are the long term effects TAPS, and what does it mean for my babies?”

It’s a complex question because we’re only beginning to understand about TAPS, and the research on the long-term effects is new. There are also different forms of TAPS, and it’s important to know which type you had, as the long-term effects are different.

Post-Laser TAPS.

Post laser TAPS is the most common form. It occurs in 16% of cases after selective laser surgery for TAPS and around 3% of cases after Solomon laser surgery. (We’ll be doing a blog later on this)

What do we know about the long-term effects of Post-laser TAPS?

We know that there are a lot of similarities between the long-term effects of post-laser TAPS, and TTTS.

Here’s a list of the outcomes in post-laser TTTS, from a paper published in 2014. The control group was 47 survivors, aged between 2 and 5 years old (average age 2 years, 4 months).

  • 9% incidence of neurodevelopmental impairment
  • 17% incidence of mild-to-moderate cognitive delay
  • 2% incidence of cerebral palsy
  • 4% incidence of severe cognitive delay
  • 2% incidence of severe motor delay

We also know that the babies who received transfusions in utero to treat their TAPS had the lowest cognitive scores and that low gestational age at birth and low birth weight were important risk factors for the cognitive delays.

Spontaneous TAPS

Spontaneous TAPS is a little rarer, in that it happens in around 6% of pregnancies.

What do we know about the long-term effects of Spontaneous TAPS?

For a long time, they were thought to be much the same as post-laser TAPS. In a paper that’s about to be published though, this has been shown to be incorrect.

Spontaneous TAPS has much more serious, much more devastating consequences than post-laser TAPS.

We know this control group is much larger and has intensive followups. In fact, what we also know is that this group is the largest known group of TAPS survivors in the world. They are followed intensively, and this group is almost double that of the post-laser group used in 2014.

The control group of 74 survivors was assessed at an average age of 4 years old (but ages ranged from 2 years to 7+ years).

Here’s the facts on the information so far from this study:

Neurodevelopmental impairment

  • Neurodevelopmental impairment was detected in 31% of the total group
  • 44% of donors had neurodevelopmental impairment
  • 4.1 higher risk than recipients
  • 18% of recipients had neurodevelopmental impairment
  • Severe neurodevelopmental impairment occurred in 9% of the total group
  • 18% of donors had severe neurodevelopmental impairment
  • 3% of recipients had severe neurodevelopmental impairment
  • Mild-to-moderate neurodevelopmental impairment was found in 20% of the total group
  • 26% of donors had mild-to-moderate neurodevelopmental impairment
  • 15% of recipients had mild-to-moderate neurodevelopmental impairment
  • Donors had significantly lower cognitive scores compared to recipients

Hearing issues

  • Bilateral deafness was observed in 15% of donors
  • In all cases based on auditory neuropathy spectrum disorder (ANSD)
  • Zero recipients had bilateral deafness

Other concerns

  • Behavioral problems were reported in 10% of the total group
  • No difference between donors and recipients
  • Parents expressed significantly more developmental concerns about donors
  • Neurodevelopmental impairment was significantly associated with severe fetal anemia, being the donor, severe fetal growth restriction, and low gestational age at birth
  • Donors with severe fetal anemia had a 6-fold increased risk for neurodevelopmental impairment
  • Spontaneous TAPS survivors show more detrimental outcomes than post-laser TAPS survivors

Objections

We know that some people are dismissing the spontaneous outcomes because the control group is too small, and that these are normal premature related issues (with particular reference to the delays and deafness).

We’d like to rebut that.

Firstly, the control group for spontaneous TAPS is the largest known in the world. A lack of diagnosis and recognition for TAPS has limited the number of cases that are able to be followed up. What we’d also like to ask is why the smaller, post-laser group follow-up number is deemed acceptable, where the larger, heavily investigated spontaneous group outcomes are being dismissed?

Secondly, whilst delays and hearing issues are related to prematurity, they are documented at much higher rates in TAPS twins, and at alarming rates in donor twins only. If the data was only prematurity related, wouldn’t we see an even diagnosis across the board, rather than a higher incidence in donors?

We spoke with an audiologist who confirmed that there is a possible link between ANSD and prematurity (however, information here is also limited as research into ANSD is new, and a rather uncommon diagnosis), and they confirmed what we’ve stated here – that if bilateral deafness was only a prematurity related issue, it would occur equally in donors and recipients, and not only in donors.

What we don’t know.

One of the biggest things about TAPS is we have to remember is this disease is literally just 13 years old when it comes to naming and recognition. The long-term effects are just only becoming known, and so it’s important that we remember that this data, while it will help us advocate and get appropriate care for our babies, can, and probably will change.

As TAPS becomes more and more recognized, and more long-term studies are completed, we will see changes to these outcomes – this is certain. For now, this data is a start, and it is more information than we have ever had.

We do have the hurdle that these control groups are small, and for definite answers, we do need larger groups to study and test. This is one of the reasons that websites like TAPS Registry exist – to pool data and increase the range of the studies. We also think this is a great time to point out that you are the voice for your children – advocate for prenatal and post-natal TAPS testing, and childhood followups.

What we do know.

We do know that whilst the group is small, these outcomes are shocking. Spontaneous TAPS is devastating, and clearly, diagnosis and intervention are crucial to lowering the risks.

What we also know is that this information now helps parents to get intervention for the babies born with spontaneous TAPS. We now have some data to help us get early intervention and assistance that we critically need.

What we also have is a reason to advocate hard for MCA dopplers and TAPS Awareness. The outcomes have been crucial to our fight for getting MCA dopplers made a standard part of testing for monochorionic twins. If we know the outcomes, we can push for testing and diagnosis, and more importantly, treatment to avoid them.

How you can advocate.

• Get routine MCA-PSV Dopplers while pregnant
• Hemoglobin and reticulocytes for both babies must be done at birth (even if you were having routine MCA-PSV Dopplers while pregnant)
• Your placenta must be sent to pathology to be evaluated for TAPS anastomoses
• Get proper ante and postnatal TAPS treatment(s), when possible
• Make sure your pediatrician and other health care providers are on-board for routine long-term follow-up to screen for the complications outlined above
• Be proactive about childhood intervention(s)
• Always ask questions.

Don’t accept the outdated excuses, and fight the myths about TAPS. Don’t let anyone dismiss your concerns or your right to a basic standard of care.

If you have a diagnosis and want to talk to others in the same boat, or you want to ask more questions, you can join our Facebook group, or just contact us. We’re here for you.

Sources:

Slaghekke, F., van Klink, J. M. M., Koopman, H. M., Middeldorp, J. M., Oepkes, D., & Lopriore, E. (2014). Neurodevelopmental outcome in twin anemia–polycythemia sequence after laser surgery for twin–twin transfusion syndrome. Ultrasound in Obstetrics & Gynecology, 44(3), 316-321.

Tollenaar, L. S. A., Lopriore, E., Slaghekke, F., Oepkes, D., Middeldorp, J. M., Haak, M. C., … & Van Klink, J. M. M. (2019). High risk of long‐term impairment in donor twins with spontaneous twin anemia polycythemia sequence. Ultrasound in Obstetrics & Gynecology.

Diagnosing TAPS

diagnosing TAPS support twin anaemia polycythemia sequence

Diagnosing TAPS 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.

Diagnosing 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 –

Diagnosing 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.

TAPS is Real.

Here’s the facts on MCA Dopplers

You’ve seen that we post a lot about the importance of MCA Dopplers.  In fact, we’re kind of obsessive, a little annoying, and sometimes downright blunt when it comes to them. (You can read a little more about how TAPS is diagnosed here.)

This installment of our blog explores a couple of really important topics regarding MCA Dopplers:

  • What are MCA Dopplers?
  • Why do we need MCA Dopplers?
  • Are MCA Dopplers the only way to detect TAPS?
  • How can I advocate for MCA Dopplers?

What we hope you come away with is an understanding of the importance of MCA Dopplers, and how you can confidently advocate for them.

What are MCA Dopplers?

MCA stands for “middle cerebral artery” and PSV stands for “peak systolic velocity.” MCA Dopplers are effectively an ultrasound that detects the speed blood is going through the babies’ brains. It’s non-invasive and requires some skill to get the reading at the correct angle. 

The resulting measurement is in centimeters per second, which is then converted to an MoM (multiples of the median, or average for your babies’ gestational age). You can do your own MoM calculations here – http://www.perinatology.com/calculators/MCA.htm

If the blood is traveling too fast, this is an indication of anemia, and if the blood is traveling too slowly, this is a sign of polycythemia.  TAPS is diagnosed when one twin is anemic, and the other is polycythemic. 

Why do we need MCA Dopplers?

MCA-PSV Dopplers are crucial to diagnosing TAPS before birth.  They’re the only reliable way to diagnose TAPS that we know of, so far.  You need to have them done every 2 weeks from 16 weeks and tracked up to delivery.

MCA-PSV Doppler measurement is a highly reliable diagnostic tool. Sensitivity (the ability of a test to correctly identify those with the disease) and specificity (the ability of the test to correctly identify those without the disease) of MCA-PSV Dopplers to predict anemia in TAPS donors is 94% and 74%, respectively. The sensitivity of MCA-PSV Dopplers to predict polycythemia in TAPS recipients is 97% and specificity was 96%. These levels of sensitivity and specificity are very good and considered acceptable within the field of medicine.

Are MCA Dopplers the only way to detect TAPS?

There are other indications that TAPS is happening. In some cases, a starry sky liver has been seen in recipients on ultrasound, in others, an echogenic placenta on donors. (Two of our founders both had starry sky livers recorded in their cases.)

But these “other findings” are inconsistent, and new research is emerging that some TAPS cases show no other signs other than discordant MCA Dopplers.

As it stands, MCA Dopplers are the only reliable way to detect TAPS in utero.

Remember, TAPS on its own does not usually present with fluid differences like TTTS.  It is a silent, deadly disease.

How can I advocate for MCA Dopplers?

If you’ve come against a wall with your doctor who says TAPS is a mild disease, this can be very frustrating. We know that there are huge risks associated with TAPS, like neurodevelopmental impairment, deafness, and death, and a lot of doctors aren’t up to date.

We suggest taking this paper to your next appointment to help you advocate.

We love our doctors and our care providers, but sometimes we need to stand up and advocate for our babies.  TAPS is a very real threat to monochorionic pregnancies. A risk of 1 in 16 for a disease that can permanently disable or kill is not to be dismissed.

Got questions? Need to talk over TAPS? Join our Facebook group, or contact us at hello@tapssupport.com.

How are YOU?

world mental health day taps support

Today we’re asking: How are YOU?

World Mental Health Day is recognized each year on October 10th. The World Health Organization uses this day to raise awareness of mental health issues, and also boost support of organizations who support mental health programs. It’s about making sure that people can talk openly about their diagnosis, and fostering the idea that mental health care should be made a priority.

Mental Health and Multiples

Multiple pregnancies are difficult. The standard risks of prematurity, low birth weights, growth restriction, cerebral palsy, extended neonatal intensive care time, and even neonatal death can be devastating, to begin with. When you factor in the complications with monochorionic twins with TTTS, TAPS, and SIUGR – extra screening, complicated diagnosis, uncertain outcomes, and the possibility of laser surgery – it’s no wonder that mothers of multiples reported a 43% higher chance of moderate to severe depressive symptoms.

complications monochorionic twins taps support ttts siugr

After birth, there is still no reprieve. A survey found that parents identified the 0-3 month age range as the hardest time, with many identifying that they needed help with mental health issues, but very few actually sought treatment or care.

With a high-risk pregnancy, there is a need for not only obstetric care but also mental health care, particularly for parents of multiples. Anxiety and depression are a real threat to this type of pregnancy, and parents should be screened for, and assisted with their needs.

Twin Loss

With this type of pregnancy comes the risk of loss. In the first year of life, multiples are at a 40% higher risk of death by both accidental and non-accidental causes. The loss of one, or both babies also has a significant effect on the mental health of the parents, and they should also be supported and referred for support.

What can we do?

Expecting Multiples

This pregnancy is balls. There’s no other way to describe it. You’re stressed, you’re at the doctors every other week and it feels like there is always another issue or complication. Don’t be afraid to talk about how you’re feeling. Please always seek help and ask for resources. Connect with communities on social media, but also find professional help, and don’t hesitate to connect with your care providers if you need help

NICU Time

It’s hard. You’re probably feeling a lot of guilt and uncertainty. Take the offers of help and support from your community, but also don’t be afraid to leave that NICU. Do things for you – take the time to do things that are part of your normal routine. You can have a coffee with friends, you can do the laundry. Check the support your NICU offers – do they have a number you can call in and check on your baby/ies? Do they have a webcam or an app? You can be connected, and not feel any guilt. Remember, you are also needing time to grow and adapt, and you need to make sure you’re ok.

After Birth and Beyond

Don’t be afraid to ask for help. Connect with your care providers, talk with your family and friends, and take help that’s offered. Make sure you’re in tune with yourself. A parent of multiples often puts themself last, because they’re attending to the needs of everyone else. You are also important, and you need to take a rest. We all joke that a trip to the supermarket is a vacation, but the reality is, you need to also make it a cup of coffee and a chat sometimes.

For Loss Families

Talk about your children, share your stories. Celebrate their birthdays and mourn their loss. Be sure to get appropriate counseling and support, and connect with the grief support networks. We are proud to share a partnership with the TTTS Support Team, who are specialized in families experiencing loss.

For Friends and Family

Check-in on the families of multiples in your life. Ask how you can help, lend an ear, and support them. It’s important that we build a village together, where everyone is safe, happy and well. It extends beyond just asking though. Make sure you carry out promises and don’t be afraid to push a little. We all like to think we’re tough and put on a strong face to the world, but underneath, there are people who are tired, scared and overcoming some difficult times. If they are loss parents, support them around the time they lost their baby/ies, and help them celebrate compassionately.

For Healthcare Providers

Don’t assume that because your patient is nodding, that they understand everything that’s going on. Take the time to check that they’re ok with what’s being said. Make sure you acknowledge their concerns and find ways to explain things in less jargon if needed. Check-in on your patients, where they are, and point them in the direction of help if they need it. Be part of the village needed to support these parents.

For Everyone Else

Our focus is parents of monochorionic twins, particularly those diagnosed with TAPS. But we understand the importance of mental health for everyone. Our challenge today is for you to ask someone “How are YOU?”. Take the time to hear someone’s story, be their village, and most importantly, help where you can. It’s so important to do this for everyone in your life, but of course, we’re wanting our multiple parents and their networks to take that extra time.

A special thank you to our doctors, nurses, psychologists, researchers, counselors and social workers working with parents of multiples today. Mental health is vital to our community.

How are YOU? Connect with our Facebook network, or contact us if you need to talk, or just be with people who are in the same place as you, or have been there.