‘You should take a look at this.’ It was IDENTICAL TWINS! I was oblivious to the doctor’s concerns.’: Endometriosis warrior welcomes premie twins in NICU, ‘You go one day at a time’

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Disclaimer: This story mentions infertility and may be triggering for some.

“‘It takes a village to heal a mother.’ This is what I learned not long after I began to heal from the trauma of my pregnancy, birth, and time spent in the Neonatal Intensive Care Unit/Special Care Nursery with my identical twin girls.

My daughters were born prematurely on the 21st October 2017, but it wasn’t until about two years later that I began to feel like myself again. This was thanks to my passion for running, writing my book 30 Weeks 1 Day, and to the many people who helped me along my road to recovery.

Courtesy of Diana Nicholls

My story began when I was diagnosed with endometriosis back in December 2015. I had struggled with infertility for years and wasn’t sure why. Then I finally received my answer. It was a shock when I was diagnosed and I felt I had done something wrong, not looking after my body in the way I thought I should have. But I was yet to learn and understand the condition was out of my control, even though I had suffered the symptoms of endometriosis since my early teenage years.

I had seen doctors in the past regarding my severe pain, however I remained undiagnosed. I began to think that this was the norm for women with periods.

Women who have endometriosis can be affected in different ways – we may not all suffer the same symptoms – however, it can be the cause of infertility. It certainly was the cause for my infertility and the symptoms I suffered were both exhausting and debilitating most of the time. The abdominal sharp, stabbing pains and cramps, brain fog, headaches, heavy bleeding, lethargy, inconsistent mood, anxiety and also depression.

After two surgeries to treat the condition, enough time had passed and by April 2017, I fell pregnant. A moment that called for celebration and excitement, but from the very beginning I held some reservation. Maybe due to all of the trouble I had leading up, my concern was that something, anything, could go wrong.

Falling pregnant did help with the symptoms of endometriosis, however just over three years later, it is still a condition I have to navigate and manage in my everyday life.

Relieved is how I felt when I found out I was pregnant, especially after everything I had already been through. I think I was relieved because I knew from that moment, regardless of how it played out, it was possible that my body could conceive.
This was followed by a little excitement, which was then followed by a little reservation and anxiety once again. And that was when we thought there was only one baby!

It wasn’t until about 10 weeks when we realized, I was in fact carrying twins. One morning I’d had a bleed which left me feeling anxious. After phoning my obstetrician she advised me to see her immediately for an ultrasound scan.

I was so nervous laying on the bed to have my scan. Unable to look at the screen (because I was afraid of what I may or may not see) I looked at my obstetrician instead. I will never forget the look on her face. A look of joy and confusion in the one expression! Those seconds felt like hours while I waited.

‘You should take a look at this,’ she said. ‘It’s twins! And I think they are identical!!’

I was oblivious to my obstetrician’s concerns when we realized I was pregnant with identical twins with a shared placenta. I was oblivious to the risks associated with twins, especially identical. And I was oblivious to the road ahead that I was about to endure. All I wanted to know when I left the clinic that day was that my twins were going to be okay.

Courtesy of Diana Nicholls

My pregnancy was fairly smooth sailing in the very early weeks, aside from the fact that my body had formed only one placenta instead of two. Twins who share a placenta can be at higher risk as sometimes there can be an unequal share of blood to each baby. This can have a damaging impact on the growth of identical twins. As it turns out, at 16 weeks, I was diagnosed with twin-to-twin transfusion syndrome, a rare and sometimes fatal disease of the placenta that affects the growth of identical twins.

I was immediately placed in the care of the Mercy Perinatal team, specialist obstetricians and surgeons at the Mercy Hospital for Women in Heidelberg, where I would be heavily monitored during my pregnancy.

Due to a crossover of arteries in the placenta, the smaller twin (often referred to as Twin Two) donates blood back to the other (referred to as Twin One), resulting in the inability to grow. Twin Two receives too little and Twin One too much, therefore placing strain on her heart.

To give my babies a chance to survive, I had to undergo surgery on the placenta, which meant using a laser to separate the adjoining arteries so the girls could grow independently. This was done whilst I was awake in theatre under a local anesthetic.

Without surgery my girls only had a 10% chance of survival.

The surgery was a success, however it left further complications where Twin One then required two lifesaving blood transfusions. Once again, performed under a local anesthetic whilst I was awake. Without these blood transfusions she would not have made it.

These procedures were terrifying. I had mentally prepared myself for weeks in the lead up to the laser surgery on the placenta, fully aware that surgery meant it could be the end. I had no time to mentally prepare for the two blood transfusions and I was just about mentally broken by the time I had to undergo these procedures.

However, my decision in the early days to continue with the pregnancy and try for both babies, meant I would endure whatever it took. Like these procedures. But that didn’t mean it was going to be an easy road ahead.

The perinatal team are the people most women don’t want to meet during pregnancy, but without having a real choice, I am always grateful to have met them. This team of specialists work hard to bring mothers and babies home safely, and after 52 ultrasound scans, 3 procedures, endless blood tests, MRIs, regular fetal monitoring and a whole lot of anxiety later, my babies were born at 30 Weeks 1 Day.

Giving birth to sick twins was a terrifying moment for me. I was holding my own breath while I hoped my babies took theirs.

This was my heartbreaking start to motherhood. My babies were sick before life began, and their fate was still months away from being realized. We would now endure the next phase which was our stay in the Neonatal Intensive Care Unit and Special Care Nursery where our premature babies would be cared for until they were ready to come home.

Courtesy of Diana Nicholls

We’d been counting the weeks and days to this moment, and every day the babies would survive in utero was a precious miracle in itself. Now we would be counting days in NICU/SCN for our twins to become healthy little babies.

My husband Cam and I, along with our twin girls Adrian and Evie spent almost an entire season in NICU/SCN. When I was pregnant and living day by day, scan by scan, it gave me little time or mental space to even consider this phase. But at the very least we knew for certain that if our girls made it through the pregnancy and were born, they would be placed immediately into intensive care. Little did I know how long that road would be. Nothing can prepare you for it, and you can only go one day at a time.

Courtesy of Diana Nicholls

But I had no idea how much time, what condition our babies would be in once they were born, and just how much of the rollercoaster ride we would endure. When we reached the end point, we’d spent 83 exhausting and worrying days in hospital. Adrian had her own set of complications at the beginning, then managed a fairly smooth run. Evie, on the other hand, became sick with necrotizing enterocolitis (NEC), an infection of the stomach, when she was four weeks old. This required immediate treatment and without it, it can be fatal.

Courtesy of Diana Nicholls

While Adrian was doing well and just weeks away from coming home, Evie was fighting for her life. It was the toughest moment in NICU, one that has stayed with me years later. Adrian came home three weeks earlier than Evie and although Evie managed to fight the infection, it still took her quite some time to become a healthy baby. When it was time for her to come home, she required oxygen and a few weeks later, surgery for two hernias. It wasn’t until about 6 months later that we began to see her energy lift and her personality come to life.

Courtesy of Diana Nicholls

By the time my girls were home, I was in pieces. I’d feared losing my babies day in and day out, not just throughout my pregnancy, but also our months spent in NICU and SCN when they were sick premature babies. I suffered postnatal depression, anxiety and trauma after the dust settled and I can easily say now, that it’s fair enough too. There are just some things that as a mother you can’t unsee.

Courtesy of Diana Nicholls

But I had enough self-awareness to know that I needed help, professional help, and almost three years later I still see my psychiatrist, because it is a part of my overall well-being. Back then, not only did I need to work through the trauma of the pregnancy, birth and time spent in hospital, but I needed help with the transition into becoming a mother and regaining the confidence I’d lost through my experience. Although seeking professional help can often be scary for many of us, including me, it was one of the best decisions I made for myself and my family. Without it, recovery would have taken much longer, and I may not have healed as well as I have.

Courtesy of Diana Nicholls

They say it takes a village to raise a child, and although this is true, I also believe it takes a village to heal a mother. If it wasn’t for writing my book 30 Weeks 1 Day, I wouldn’t have met the incredible people that helped me along the way. Each person I worked with, took my story and kept it real. Without them realizing, our interactions helped with my healing.

Our stories about difficult pregnancies, anxiety, postnatal depression and post-traumatic stress disorder are so important to share in some way.

I wrote for my sanity when I was pregnant and no longer able to run due to the risks, however writing is what saved me while suffering postnatal depression and anxiety. I found peace in writing and without realizing, it became part of my therapy.”

Courtesy of Diana Nicholls

This story was submitted to Love What Matters by Diana Nicholls of Ivanhoe East, Melbourne . You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories about babies battling the NICU here:

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