My husband Mark and I married in 2014 and decided fairly quickly that we would like to start a family. We were incredibly lucky when I fell pregnant only a few months later. It was at my first OB appointment at 9 weeks that we found out we were infact pregnant with identical twins. Our twins were MCDA, meaning they had their own sacs but shared a placenta. We were quite quickly informed of all the risks that came with carrying this type of twins, however we were still extremely excited.

 

My pregnancy was quite perfect. I never had a day of morning sickness and every one of my fortnightly scans was prefect. At 20 weeks we were over joyed to find out we were having baby girls. At 23 weeks and 5 days I was at work when I started getting quite bad back pain. I brushed it off, knowing that I was carrying twins and back pain is to be expected. When I couldn’t sleep at all that night due to the intensity of the pain, I called by OB in the morning, after sending my husband off to work. She immediately told me to grab my bag and come to labour and delivery at the hospital. I called my husband back and told him to come home and he made it back from the city in record time and we headed in.

 

At the hospital, I had a swab that indicated I would go into labour in the next 7 days and I was given steroid shots. On the Monday, I was sent for an ultrasound and told that our babies had developed acute stage 3 Twin to Twin Transfusion sydrome, where 1 twin had cut off their blood and nutrient supply and sent it all to the other twin. Our donor twin was essentially shrink wrapped in her own sac with no fluid and very visible brain damage. The recipient twin was in renal failure. We were told at that point that the pregnany would terminate on its own.

 

After meeting with our OB, she explained that their was a type of surgery that could be performed where the blood vessels that the babies share can be severed, giving each twin back their own blood and nutrient supply. However less than a handful of surgeons in the whole country can perform this surgery and it still carries a great risk of losing 1 or both babies. We made an appointment to see a surgeon at 8am the next morning.

 

At 5 am my waters broke, meaning that it was now impossible to perform the surgery and that I was in labour. We were taken down to the NICU and told that our Twin A had a 3% chance of surviving with no disabilities, and our Twin B had such signicant visable brain damage and she would have no quality of life. We were left with a few hours to decide whether we wanted to try and resusiate one or both babies when they were born and if we wanted to try and sustain life. Because they were only just 24 weeks and 1 day, the hospital did not have an automatic resuscitation policy and it was left up to us what we wanted to do.

 

It was an impossible decision to make and one that I wouldn’t wish upon anyone. After a while we decided that we would try and sustain life for Twin A and provide comfort care for Twin B. I was told it didn’t really matter if I gave birth naturally or via c section as it was likely that both babies would pass anyway.

 

That night, at 24 weeks and 1 day, Twin A, Maddison Anne, was born naturally at 8:57pm, weighing 667grams. Twin B, Paige Avery, was born 4 mintues later, weighing 495 grams. Paige lived for 16 minutes. Maddison was quickly intubated and taken down to the NICU at the Royal Women’s Hospital where she stayed for the next 118 days. Maddison had quite a turbulant stay in the NICU and we watched her suffer though a hole in her heart, a brain hemorrhage, collapsed lungs, chronic lung disease with emphysema, sepsis, 2 rounds of laser eye surgery for retinopathy of prematurity that threatened to leave her blind as her retina started detaching, blood clots the stopped blood flow to her leg, relfux, extreme jaundice and blood transfusions. She had needles every day and we watched her stop breathing almost daily. She was born with fused eye lids, that we did not see open for nearly 3 weeks. Her skin was transparent and sticky like a frog, and we had to unfold and massage her ear skin to make sure it stayed in shape. Her entire head was black when she was born because it was filled with blood and bruising from the TTTS, the brain hemorrhage and the trauma of being born so fragile. They had to sedate her to stop her fighting the ventilator and she was placed on an oscillator which vibrated her body 24 hours a day.

 

It was very hard to feel like a parent in the NICU. We didn’t get to hold Maddison for 21 days and even after that we couldn’t hold her daily as she was not stable enough. She didn’t wear clothes for 2 months and didn’t have her first bath for nearly 3 months. Watching other babies come and go around us while we were still on a ventilator was gut wrenching. When the doctors could not get her to breathe without the ventilator after several weeks, some very difficult discussions about Maddison’s future started taking place. Her oxygen requirements kept increasing and the doctors told us that unless we start a course of strong steroids, there was not much more they could do for her. Maddison has 3 rounds of DART protocol steroids before she finally came off the ventilator, which carried a risk of life long challenges including severe learning difficulties. The day we organised a funeral director to come to the hospital to talk to us about Paige, Maddison coded and we had to leave the meeting. The day we found out about her brain hemorrhage, we went down to the car park and sat in our car and cried. 

Maddison had a lot of difficulty feeding and would stop breathing every time she took a bottle or breastfed. We had to learn to feed her while she was laying on her side to help her airflow. It was the thing that kept her in scn and stopped her from going home.

The very last check they do in NICU before you go home is the newborn hearing screen. After everything we had been through, we honestly hadn’t even considered her hearing. Maddison failed the screening. The tried again a few days later and she failed again. We were referred to an audiologist as an out patient for a few weeks after we came home. At this appointment we found out Maddison was deaf. She couldn’t hear a jumbo jet, they told us. Immediately I thought of all the hours we spend talking and reading to her in the NICU. We had read her the entire Roal Dahl’s Matilda. And so we were thrown into the world of Deaf people.

When we finally bought Maddison home after 118 days, our prem journey did not end. Our life quickly filled up with Early Intervention appointments. We would have speech therapy, occupational therapy, physiotherapy, audiology, a Teacher of the Deaf, Nutritionist, Endocrinologist, because we had also found out in nicu that Maddison had thyroid disease, paeditrician, feeding clinic, maternal health nurse. Some of these appointments were weekly. We often had over 6 different appointments every week, each lasting for around an hour.

 

That experience taught me the importance of connecting with others that had been through this experience. At one of my maternal health nurse appointments, the nurse was listening to everything we had gone through and everything we were still going through, and she looked at me and didn’t know what to do with me. Maddison did not fit any of her charts or guidelines. So she started looking. And she called me back a few days later and she said I’ve found something for you. It’s a support group through an organisation called Miracle Babies. So when Maddison was around 6 months old (corrected), I went to my very first Nurture Group. And I knew as soon as I walked through the door that I had found my people.

 

Nurture Group is a support group and a play group only for people that have experienced NICU or SCN. It is run by someone who has been through it themselves. So when I walked in and I saw children on oxygen, or feeding tubes, or not walking even though they were 2 or 3 years old, and I saw tiny, tiny toddlers and even tinier babies, I knew these people would understand. I didn’t have to explain Maddison’s corrected age vs her actual age. It was totally normal that she was 6 months old but only weighed 4.2 kilos. No one blinked that she had hearing aides or wasn’t sitting up yet. But there were also children full of life, running around, making noise, playing, laughing and enjoying every minute. And I have been to Nurture group every fortnight for 9 years now. About 4 years ago I took over running the group and now I get to support other families as they find their way through this journey.