Twins with TAPS Birth Story

Twins with TAPS

Author: Marni Cochrane

My husband and I had been trying for a baby for 7 years before we finally started our first round of IVF. I had never wanted to do IVF due to how invasive it is but it was our only chance to complete our family. I am so glad I did it- despite it being a really hard time, everything turned out better than we had ever hoped. We ended up with 3 embryos from 5 eggs and had one transferred. 

10 days later we got the call to say we were pregnant and we were just over the moon. We couldn’t believe that we were pregnant on the first round! We had two scans in the obstetrician’s office which confirmed a baby and a heartbeat and all our blood tests came back normal. The both of us just couldn’t believe our luck after so long together and so long trying.

Twins with TAPS conceived thru IVF

Finding out we were pregnant with twins

At my 13 week “professional” scan, we were extremely nervous. The sonographer then asked, “How many scans have you had before today?”. After a brief explanation, she replied “‘Cause you know there’s two in there, right?”. I laughed and said “You’re joking aren’t you?” to which she very seriously said “Oh no, I wouldn’t joke about that!”. She proceeded to show me two little heads on the screen. My first internal reaction was “NO!” I was immediately fearful for the health of the babies and myself, my body, our finances. The whole scan was a blur, but the babies were healthy and growing well. We also found out we were having little girls. It took a week for the shock to subside and excitement to set in. Our 16 week and 20 week scans were great, too. 

At the same time, my mother was very sick with terminal cancer and I really relied on “seeing” the babies as my escape from everything that was happening with her. 

22 weeks pregnant with twins

At 22 weeks, we walked into GCUH for our first MFM scan expecting everything to be perfect as usual. After 2 hours, and waiting for a doctor to see us, we were given the news that we had Twin Anemia Polycythemia Sequence. We were immediately booked in for two further scans. One two days later to check that the MCA doppler reading did indeed indicate twins with TAPS and a further scan the following week to discuss options for treatment. We were distraught. I blamed myself. My husband and I both couldn’t work that day, and stayed at home together. We cried, we googled information and we talked about the best and worst case scenarios.

Twins with TAPS – Stage 2 TAPS 

The scan two days later confirmed stage 2 TAPS. Our consultation with a specialist from Mater Mother’s hospital was truly terrifying as we were presented with all the options for treatment- laser surgery, in utero transfusion, selective reduction and expectant management. I will never forget the look on my husband’s face during the selective reduction discussion. Thankfully the doctor believed that expectant management was our best course of action. This meant that we would have weekly scans and most likely deliver at 32 weeks if not before.

My mother passed away the night after our second MFM scan. After her death and funeral, I put all my energy into my beautiful babies and threw myself into learning everything I could about MCDA pregnancy and TAPS. 

In utero transfusion at 29 weeks pregnant

Twins with TAPS  – Stage 3 TAPS

At 26 weeks, I was hospitalised for four days with unexplained antepartum hemorrhage, which thankfully resolved. I decided it was time to go on maternity leave from work early to ensure I was ready for any other complications and possible early labour. By 27 weeks, all our scans were stable and the babies were reassuringly active every scan. At our 28 week scan, we found out the TAPS had progressed to stage 3 as our anemic donor baby was showing cardiomegaly (enlarged heart) and our polycythemic recipient was showing liver changes. We went to The Mater in Brisbane to see the wonderful Dr Glenn Gardener who recommended an in utero transfusion. 

In utero transfusion at 29 weeks pregnant with twins

At almost 29 weeks gestation, we drove up to Mater Mother’s hospital for our treatment. It was the strangest feeling, driving to a procedure that could risk the lives of our babies. But not doing the transfusion could also risk the babies’ lives. My husband and I just kept telling each other that our babies were in the best hands. 

I was given steroids in the days prior to help develop the babies’ lungs. The procedure was done in an MFM ultrasound room. I was given something to stop contractions, a painkiller and IV antibiotics. I had a local anesthetic and then a needle was inserted into my belly, through my placenta and into the umbilical cord of my donor baby where they tested her hemoglobin before administering donor blood. She was severely anemic and I knew then and there that I had made the right decision.

The polycythemic twin was much more difficult to treat- they removed blood through the umbilical cord and diluted her blood with warm saline. Her blood kept clotting and they had to stop the procedure early. However, the procedure was a success and I was sent home after a short stay for observation. For the next 2 scans, the babies were stable and our donor twin (who was previously classed as growth restricted) had suddenly caught up to her sister in size and weight!

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32 weeks pregnant with twins

At week 32, our scan showed the TAPS had progressed although not as before. This time our recipient was suffering more than our donor. My MFM team wanted to deliver in the next two days but there were no NICU beds available for our babies. We were again sent to Mater where the decision was made to do a second in utero transfusion. This time the procedure was done in theatre with an epidural due to the risk of early labour. The procedure was again a success and I was sent home the next day with the hopes that we could get to 34 weeks. At this point, any day that the twins were inside my belly and growing was a good day.

33 weeks pregnant with twins

At 33+2 weeks gestation, on a Saturday night, my waters for my twins with TAPS broke. We rushed to hospital and as I was not showing any other signs of labour. I was admitted and then given antibiotics over the next few days. Upon admission I was swabbed for infections as standard which came back negative. In the days after my admission, there was much confusion about what to do with me as labour was imminent and there were still no NICU beds for my babies. I was devastated. At one point a c-section was booked by a doctor who completely overlooked my case. It was only when I flagged the twins with TAPS to another doctor that the decision was made to transfer me to Mater Mother’s Hospital for consultation and delivery. 

On Tuesday 13th June, I was admitted to Mater Mother’s at 33+5, and the MFM team were immediately consulted. They made the decision to go ahead with a c section at 34 weeks which meant I only had to wait 2 days to meet my girls. The next day, on Wednesday 14th June at 33+6, I had a scan in MFM where it was confirmed that only baby B’s sac had ruptured. Both babies were looking good with normal movements, dopplers, blood flow and heart rates. 

Twins with TAPS in special care

Giving birth to twins with TAPS at 33 + 6

Just a few short hours later, it was discovered during a routine CTG that baby B was in distress. Her heart rate was elevated and did not come down over the two hours I was on the CTG. All of a sudden I had nurses wheeling in fluids and midwives and doctors surrounding my bed. It was a complete blur but it was decided the babies needed to be delivered immediately. I burst into tears.

My husband was at home on the Gold Coast getting a good night’s sleep in preparation for the c section the next day and he would not arrive in time for the birth. Within minutes I was in a gown, and being whisked away to theatre. Everyone was across our case and the neonatal team were ready to go. After a brief chat with the doctors, midwives and pain team, I was having my spinal block. My requests: my birthing playlist of my favourite songs and that hubby could be let in when he arrived to follow the babies to NICU. 

Time seemed to stop as I tried to wrap my head around what just happened and that I was about to meet my girls. I was terrified and all I wanted was to see and hear them cry. The first to be born was little baby B, Wilhelmina. She had the sweetest cry. Within seconds, baby A, Poppy was born, also crying immediately. They were tiny, weighing only 1740g and 1897g. My husband arrived in time to see the babies being cleaned up and was able to escort them to NICU. 

I got to meet my babies after recovery. They looked so fragile in their isolettes. They didn’t really feel like “mine” yet. 

Twins with TAPS in NICU

Twins with TAPS – Our NICU journey

The days that followed were a blur of pain, confusion and devastation. We found out a couple of days after the babies were born that I acquired an e-coli infection through the course of my hospital stay. This infection spread to my placenta. Baby B / Twin 1’s sac ruptured due to the second in-utero transfusion and she contracted the e-coli infection. They attempted multiple lumbar punctures to test for meningitis which were unsuccessful.

We had to make the decision to treat as if she had meningitis and she had a long line inserted in her arm for 3 weeks of antibiotics. She also needed breathing support for almost 2 weeks. Baby A / Twin 2 was unaffected by the e-coli infection. She came off breathing support at 3 days old. Due to the in-utero transfusions, both babies’ hemoglobin levels were normal and neither needed a transfusion. After 10 days, we were transferred from The Mater NICU to GCUH Special Care Nursery. 

The girls spent an additional 16 days in special care

The girls stayed for another 16 days in special care before we could take them home. They are now 4 ½ months old and absolutely thriving. So far the only issue that we are facing is that Poppy (our TAPS donor) has a mild permanent hearing loss (SNHL) in her right ear which is likely related to TAPS. Research for TAPS and its lasting effects is still needed but It’s thanks to the Drs at both GCUH and Mater Mother’s Hospitals that our beautiful girls are here, hitting milestones and kicking goals.


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