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Student Midwife with Twins or Triplets. The Pros and Cons of having a Student Midwife.

You may already suspect you are pregnant, however that first scan and seeing the heartbeat is always a magical moment.    Congratulations!  You are definitely pregnant.  There is the heartbeat.  Oh wait, I think there is a second heartbeat. You are pregnant with twins!  Oh, I think there is a third baby!  Congratulations, you are having triplets!

Once you have recovered from the shock of finding out you are pregnant with multiples, your thoughts will soon turn to your pregnancy care.  There are many options, all of which your GP can discuss with you.

One aspect of pregnancy care that you may not have thought of, is having a student midwife.  A student midwife is a midwifery student that is partnered with you through your pregnancy, birth and postnatal period.  The student is supervised by a registered midwife.  There is a two-way benefit to this.  For you, you may feel overwhelmed with all the information that you are presented with.  A student midwife will be able to explain things and help you ask the right questions.  It will also mean that you will have continuity of care, as the student midwife will attend all appointments with you. Oh, and I should mention, it is totally free.

In return, it is invaluable for the student to develop an intimate understanding of the process that pregnant women go through.  And let’s face it, for a student midwife with twins or triplets, it is an amazing experience for them.

Twinfo asked in our closed Parents of Multiples group for some feedback from those who had used the services of a student midwife with twins or triplets.

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Author: Stephanie Ernst 

What is TAPS?

TAPS is a rare disease affecting twins sharing a placenta. There’s a lot of myths and misconceptions out there about it, which is something I want to try and “bust” for Twinfo readers!

As a TAPS mum myself, I know how scary and confusing this diagnosis can be. So I wanted to help you understand our disease and what is and isn’t true about it.

TAPS is Rare

Twin Anemia Polycythemia Sequence is a rare disease affecting twins who share a placenta.  (Note:  We say twins who share a placenta because TAPS *has* been recorded in non-identical twins. It’s rare, but it has happened in some cases of fused placentas – which is why it’s important to say a shared placenta).

There are 2 forms of TAPS – the “more” common form is spontaneous TAPS, which happens in around 3-5% of monochorionic twin pregnancies.  The second type happens after laser surgery for twin-to-twin transfusion syndrome, where connections in the placenta are not sealed properly or are missed on the edges of the placenta.

It’s caused by tiny connections in the placenta, less than a millimetre thick.  Unlike TTTS, which can be rapid and happen in hours and days, TAPS is a long, slow transfer of red blood cells from the donor twin to the recipient.  This causes the donor twin to become anemic with blood like a rosé wine, and the recipient twin with blood as thick as tomato sauce. 

The anemia can cause some problems with the donor twin, like heart failure, and contribute to them not growing as well as their sibling.  For recipient twins, their blood is so thick that it can cause problems for their hearts pumping it around. It can also lead to blood clots, causing severe problems like in-utero strokes and loss of limbs.

How is TAPS Diagnosed?

TAPS is diagnosed 2 ways.

TAPS and Twins – Diagnosis before Birth

Before birth, this is using doppler readings on the mid-cerebral artery in the brain. It’s like a speeding test on the brain – soundwaves are bounced off the blood as it moves through the brain. If it’s moving too fast, this can be a sign of anemia and too slow, a sign of polycythemia. 

These measurements are checked carefully (they should be checking them 3 times and taking the middle reading) and compared to each other. TAPS is diagnosed on the difference between the readings. If one is moving too fast and the other too slow, this can indicate that TAPS is developing.  Remember that just like a speeding camera, the readings depend on the operator’s skill and getting the right angle. If you have one lousy reading, it’s a good idea to go back and get checked in 2-3 days to confirm the diagnosis.  

It’s important to remember that there are other signs of TAPS on ultrasound as well.  Your team should also be looking for these.  Things like a bright appearance (echogenic) to the donor’s side of the placenta or an enlarged heart in the donor indicate TAPS.  Recipients can also have something called a “starry sky” liver. 

Even though there are other TAPS signs, you do need to have MCA dopplers done every 2 weeks, starting no later than 20 weeks.  These are still the most reliable way to detect TAPS in utero.

TAPS and Twins – Diagnosis after Birth

After birth, TAPS is diagnosed through blood testing, where they check the number of reticulocytes (or young, mature red blood cells). TAPS donors have high numbers of these, as their bone marrow is constantly creating red blood cells to compensate for all the ones they’re sending to their sibling. They’re also going to have low haemoglobin, meaning they may need some transfusions to kickstart their own red cell production.

Recipient twins might also need to have a procedure done called a partial exchange transfusion, where they will thin out the baby’s blood with saline, and take some out. 

Short And Long Term Effects of TAPS

One of the important things to remember is that both forms of TAPS have different outcomes, but that’s why it’s so important to screen for it. 

Post-laser TAPS has a higher rate of mortality for donor twins before, and just after birth.  However, long term effects are very similar to TTTS cases, with donors and recipients equally impacted. 

But spontaneous TAPS is very different.  The long-term effects of spontaneous TAPS are quite shocking, with donors at risk of a specific type of deafness (around a 15% chance) and are 4 times more likely than recipients to have some form of cognitive delay.

This is why we advocate so hard for routine screening for TAPS and twins.  Early intervention is vital, and there are treatment options available for TAPS patients.

The TAPS Support Foundation

So now, why is there a foundation for TAPS? Back in 2013, when I was diagnosed with TAPS, there wasn’t a lot of information out there about it.  A couple of journal articles, and a Wikipedia page, and really that was it.

Over the years it’s been hard to find a community that understood our TAPS diagnosis, and many doctors failed to recognise it as a different disease to TTTS.  There’s still a myth out there that it’s a form of TTTS, (it’s not!) and this means that some doctors will not take it seriously or do followup testing.

The TAPS Support Foundation

We started the TAPS Support Foundation to help raise awareness of TAPS, but also to help fund research into it.  In 2021, we’ve taken on our biggest project yet and are trying to raise the money to help put a part time TAPS researcher on at a university for 12 months. 

Because of our close association with researchers, we also have access to the latest research as it happens, and we even do some writing ourselves to raise awareness of the complications of twins!

We also provide open access resources on our website TAPSSupport.com.  And we do have a Facebook group, which is open to researchers, doctors, families and caregivers who either had, or think they may have had a TAPS diagnosis.  We call it our family, because it’s a place where you can go where everyone had been down a similar path, and understands the frustration of the diagnosis.

If you’re facing a TAPS diagnosis, or you want to learn more – get in touch with us! We’re here to help you navigate that diagnosis, and advocate for care before and after birth. 

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Author: Lauren Neuner

It was a Tuesday afternoon and I was excitedly clock watching, counting down the hours until my dating scan. I was not convinced that I was pregnant, I had absolutely no symptoms, no morning sickness or anything, I just felt like my normal self. I had only just had a chemical pregnancy the month before so I didn’t exactly trust the pregnancy test anyway.   

Finding out I was pregnant with twins

Before I knew it though I was laying down on the bed at the ultrasound, my husband next to me and we were anxiously watching the screen to see if we could see anything.  

“Oh there it is!”, the sonographer said. And sure enough, there on the screen was this tiny little jelly bean shaped baby, we could even see its tiny little heart beat flickering along.  My husband and I stared happily at out tiny little baby, relieved that everything looked okay. 

“I will just have a look around and check everything else is okay”, the sonographer explained. He moved the little wand thingy over my belly and that’s when I thought I saw another little jelly bean, he quickly moved back to it. “Oh! There’s another one, you are having twins”, he said in a very matter of fact tone, as if this was everyday information to tell someone.  

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Names in this story have been changed to protect the privacy of the family involved.  Selective Reduction is a difficult decision to make. It is the last chance technique used to save one or more babies’ lives in multiple pregnancies. Twinfo respects these families’ decisions and offers this story from the mother’s perspective in the hope that it brings some understanding to the decisions families who take this route take.

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When Sarah and her partner discovered they were having identical twins, they were overjoyed. Two babies to complete their family was a miracle. 

At 12 weeks, it was discovered that baby B was measuring smaller and had a velamentous cord insertion.  All the other tests came back fine, so it was simply a matter of watching and monitoring closely for any complications.  Sarah knew all the questions to ask. She knew that her local clinic would refer her to a highly esteemed major center close by if anything like TTTS, TAPS, or SIUGR came into play. 

When Things Start To Go Wrong

At 18 weeks, Sarah’s routine check revealed some concerns. Baby A had too much fluid, and Baby B’s growth was not as good as it should be.  The family was immediately referred to the central hospital for a second opinion. It was confirmed that Baby B had type 1 SIUGR.

At this stage, a discussion was had about all the options available for continuing the pregnancy, including a difficult conversation about reducing the pregnancy down to just one baby.  At this stage, the decision was made to watch and wait, as both babies were stable.

Watching and waiting was difficult for Sarah.  There were never clear answers. The word stable became a mantra for her – but the emotional toll of week by week, no changes, or no real solutions took its toll.

Reaching Out

Sarah connected with several online groups about her story and reached out to several advocates and experts about her case.  There were mixed opinions, but many spoke of positive outcomes, and this gave her hope. 

Coming from a research background, she also invested time into reading research and educating herself on all possible outcomes.  All the options were discussed at each appointment, and frustratingly, watch and wait was still the most viable option.

Sarah did feel she understood her situation and that her team was willing to work with her and her decisions.  Although the feeling of a lack of control was there because her case was so precarious, it was under control.

A Turn For The Worst

At her 23 week appointment, things began to deteriorate.  Baby B’s growth had slowed, and her cord flow had switched to reversed, meaning that she was showing signs of dying in utero.  Unfortunately, this meant that decisions needed to be made, and fast.  The shared placenta and the fact that the pregnancy hadn’t reached viability made the situation dire. If baby B died, then Baby A was at risk of death or permanent injury as well. 

During a 5 hour long consultation, the option of laser surgery was raised, as well as continuing to watch and wait. However, Baby B’s situation was difficult, and weighty decisions needed to be made.

Sarah was able to ask questions, bring forward research, and ask questions. Her team went through all the possible outcomes and even supported her asking so many questions.  She saw a counsellor and felt supported the whole time.  There was no pressure, only answers, and support.

Selective Reduction: Difficult Decisions

At 23 weeks, 2 days, Sarah said goodbye to Baby B. Cord occlusion was performed. She died hearing only loving words from her parents and knowing only safety, warmth, and love.

Sarah was at peace with her decision because she knew deep down it was the one that could bring the family the most hope. They found peace through the heartbreak and sadness, knowing that their team supported them throughout the journey. All the decisions were made based on evidence and supported by facts.

Testing revealed that baby B had sustained significant brain injury before the procedure was performed and that her chances of survival were slim.  The family took comfort in knowing that this was the best decision for them.

The Next Chapter

Baby A flourished and grew and was delivered safely and well.  Sarah also spent time with Baby B after birth, giving her love and kisses and saying their farewells. This was an essential part of the journey for the family.  The pathology reports confirmed that the placental sharing and cord insertions were the cause of her issues.  Sarah felt that this finally put her at peace with her decisions.

Selective Reduction: Things To Consider

Selective Reduction is a difficult decision to make.  Medical teams use it as a last resort, and it is a tough choice.

Many outsiders don’t realise the depth of the dilemma that families in this situation are in. It is a difficult decision that is made with a lot of support and resources given by professionals.  Families often feel judged and shamed because they have had to go through this trauma and make decisions that no families think they will ever have to make.

Society looks at twins with rose coloured glasses, and there are often heartbreaking consequences of multiple births.  There are many complications, and there are difficult situations that families find themselves in due to this.

In Sarah’s situation, the family knew that there were potentially life-threatening and severe long-term consequences for baby B if she survived. There was also a risk of extreme prematurity, putting both babies at risk. If baby B died in utero, there was a high chance her sister would die or have serious consequences.

The decision is difficult, but the right team and the right resources can help. It’s essential to support these families and not pass judgment on them.  They have made difficult choices, and it’s often not about choosing life but choosing the quality of life.

Sarah’s surviving twin will know she had a sister and that she was loved very much.  Her family has made the decision to tell her more as she grows older and can understand. They are very much at peace with their decision and know that the support and love they have received from their family and friends have helped them grow.

Selective Reduction is a difficult choice that is stigmatised by a lack of understanding and knowledge. It’s essential to open conversations about it.

For families who have lost a twin due to selective Reduction, a judgment-free organisation exists called The Center for Loss In Multiple Birth. They have resources available to you and can offer comfort and support for your decisions.  The TTTS Grief Support Group also has a closed group specifically for families in this situation. Contact their admins for more information.

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This story is written with compassion and dedicated to Baby B, and Sarah who shared her story with me.

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