Wilhelmina and Poppy, 33 Weeks

Miracle Mum Marni shares Wilhelmina and Poppy's story:

I didn't find out I was pregnant with twins until 13 weeks. Everything was going really well until our first MFM appointment at 22 weeks, when we discovered we had TAPS (Twin Anemia Polycythemia Sequence) which occurs in 3-5% of shared placenta pregnancies. One baby was anemic and getting too little red blood cells and the other baby's blood was too thick with an overload of red blood cells. The average gestation of delivery for TAPS twins is 32 weeks. We were closely monitored with weekly ultrasounds. At 29 weeks, the anemic twin's heart was becoming enlarged and the polycythemic twin's liver was suffering. It was decided that we needed to have an in utero transfusion to buy the babies a bit more time in the womb. This involved needles going into my belly, through the placenta and into the babies' umbilical cords to deliver donor blood to the anemic twin and remove blood and exchange it with saline from the polycythemic twin. A second in utero transfusion was performed at 32 weeks, all up getting us to 33+6 before one of the twins' sac ruptured and the babies needed to be delivered by emergency c-section.

Amazingly, due to the in utero procedures, my baby girls did not need transfusions when they were born.

Even though we expected NICU time, nothing can prepare you for the day to day challenges that your babies face growing, learning to breathe and feed. I also had challenges - I had to deliver the babies in Brisbane, an hour away from my home on the Gold Coast, due to a lack of NICU beds at my home hospital. I had to recover from a c section while staying in accommodation and commuting back and forth to the NICU.

Twin 1 (Billie) who was the polycythemic baby, picked up an e coli infection as a result of her sac rupturing. They attempted multiple lumbar punctures to rule out meningitis but they were unsuccessful and she had to have a long line inserted into her arm for 3 weeks of antibiotics. She also needed breathing support for almost 2 weeks. Seeing her go through all that was so hard - even though we knew all the treatments were necessary, hearing my baby cry as she was poked and prodded was heartbreaking. She would also constantly pull out the CPAP. I couldn't just pick her up and comfort her.

Twin 2, (Poppy) who was anemic in the womb, kicked goals, coming off breathing support at day 3 and being the first to attempt breastfeeding. However, she would have bradycardic and desaturation episodes, sometimes requiring stimulation which was really scary.

After 11 days in Brisbane in the NICU, the babies were transferred to Gold Coast to spend the next 16 days in SCN. Billie's long line came out and we were able to go home a few of days later- all up staying 27 days in the nursery.

Although the first few days at home were rocky (something they don't really prepare you for!), we kept the girls on the same changing and feeding routine as NICU & SCN which helped us so much.

Poppy has a mild permanent hearing loss in her right ear, which could be as a result of the TAPS. Other than this, Billie and Poppy are thriving. Now almost 6 months actual and 4.5 corrected, they are almost 7kg and meeting all their milestones for their corrected age. They are just such a joy and you would never know by looking at them that we went through this intense and scary journey.

NICU and SCN was one of the hardest things I have ever had to go through and I cried every day leaving my babies behind. But I am so thankful for it too. Every nurse we came across was caring and so passionate about what they did and the girls received exceptional care. They also cared for us and linked us with resources such as psychology. I also had one nurse help me make a pumping bra from a cheap Kmart nursing bra!

If you are going through NICU, don't forget the self-care. Your babies are in great hands. Make sure you ask for help, especially if you need to talk to someone and take time out for yourself and your partner.

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