Belinda's story

Mater Mum Belinda faced challenge after challenge including 10 weeks' hospital bed rest, on her journey to meet baby Madeleine. After celebrating Madeleine's first birthday Belinda has reflected on her experience, sharing her story in her own words:

"Preparing yourself for one of the biggest moments in your life is daunting and exciting and filled with many mixed emotions... and so many hormonal changes!  It's a scary ride for every expecting mum.

A few months before I fell pregnant, I visited a gynaecologist to discuss some polyps they had found on my ovaries. During this visit the doctor brought up my age (37 at the time) and the fertility statistics for my ‘senior’ status. I was terrified when he talked about the stats for women my age and so I decided to have my egg count tested. The day I received these results I rang my mum and was in tears. He had told me that my egg count was below average (even lower than what it should be for my age). He mentioned that at my age the eggs will continue to reduce, and leaving it for even another 6 months wouldn't be ideal. I couldn't really digest the information at the time. I felt as though the likelihood of me ever having children was very slim and I was devastated. I tried to put it out of my mind for a little while and just sat with the information...what I didn't know at the time is that in a matter of months I would be pregnant.

When I fell pregnant in April 2016, I was probably the healthiest and happiest I'd been in a long time. I had spent the previous year and a half focussing on myself and doing a lot of soul searching. I had lost 15 kilos, I was exercising regularly (I had even completed a half marathon), I had become 90% vegan (a joke between my friends because I would eat chicken burgers in the early hours of the morning after a night out), I had a great job and an active social life.  I look back now and attribute my state of mind and health to why I fell pregnant.

The pregnancy started out as uneventful, I didn't have any morning sickness, I was maintaining my existing exercise regime and I didn't really have any cravings (except for anything potato, but my love for chips extended well before).

On the 3 May 2016 we had our first scan, it was an optional seven week scan and we saw the first pictures of our little bambino. Everything was perfect! We were starting to feel really happy and excited.

The next scan was with my obstetrician on 27 May 2016, this was our first appointment to discuss the pregnancy and go through the birth plan and our first official scan at 10 weeks gestation. Following this I was sent for blood tests that revealed I had low PAPP A which meant the baby's growth would need to be monitored very closely throughout my pregnancy and the likelihood of an early pregnancy was high.

At 11 weeks I experienced my first episode of bleeding. Our experience wasn't great in the emergency department because they didn't have the equipment to do an ultrasound so they just took my HCG levels which indicated I was still pregnant and was told me this can happen to a lot of women. They couldn't really tell me any more than that. I was obviously very worried but I did consider that maybe I was going through the same experience my Mum had with me - she had bleeding throughout her pregnancy and was on bed rest for some of it.

We had a test to ascertain the likelihood of the baby having downs syndrome which revealed a 1 in 8 chance (I believe at my age the odds start at 1 in 100s) but this test showed that we had a 1 in 8 chance, so I opted to have chorionic villus sampling (CVS) where the amniotic fluid is tested. There were risks with this procedure and due to the complications I was already having it was a difficult decision, but knowing how high our stats were, it is something that we wanted to know. The short term results showed it was negative for downs syndrome, but we needed to wait for the long term results because they had to culture the sample.

The day I received the call from the nurse at the Mater, I was at work and I honestly thought everything was going to be fine. We had already dealt with the scare of the haemorrhaging, the fact that the baby's growth could be a problem and now we were given the news that the baby had a chromosomal abnormality - a small duplication in the long arm (q) of the 8th chromosome. We sat in a little room at the Mater and were given the sequence of the abnormality, we were told that they hadn't seen this sequence before and therefore couldn't link it to a syndrome, but because this is a new testing mechanism it could also mean that many people have these duplications without even knowing it. The Mater team and our obstetrician couldn't really tell us any more than that, so it was suggested that we see a geneticist. In the meantime Mark and I had blood tests to see if either of us had the same duplication.

When we met with the geneticist he explained that if either one of us had the same sequence/duplication that it would be a more positive outlook, that it was a very small segment of the long arm that was duplicated, therefore the impact (if any) was likely to be subtle and related to learning difficulties or mild autism. They advised that it was unlikely to be physical abnormalities and that the outcomes for girls were more positive.

The gender was something we hadn't planned on finding out but the day we received this news we were handed a report to discuss the chromosome abnormality and on this report stated the sex of the baby.  I didn't even notice it, but 'eagle eyes' Mark was all over it and I heard him ask was "Is this the gender of the baby?" pointing to the report, and the doctor said "Yes, sorry were you not wanting to find out?", followed by "Don't get too excited just yet, you have a lot to overcome first". This put such a dampener on what was a little piece of excitement amongst so much stress and uncertainty. We were having a little girl.

I suffered another even heavier bleed and spent a night being observed in hospital and was told to take it easy.

A week later I received another phone call at work that the blood tests revealed the chromosome abnormality was paternal and most likely to represent a benign familial variant. In other words, it had been passed down from Mark (who also carried the exact same duplication) and because he was ‘normal’ it was more likely that she wouldn't be affected by it (they prefaced this by saying that it could present differently in our baby so they couldn't rule out that she wouldn't be impacted). The odds seemed to be stacking up against us.

Up until this point we'd had so much uncertainty that I hadn't really felt like I was pregnant. It was all so clinical. I hadn't felt like we could announce the pregnancy broadly or that I could even enjoy the process.  At about 18 weeks gestation we decided to officially announce on social media and for the following five weeks I felt more and more connected to the baby and started feeling excited.

At 23 weeks and 2 days gestation I woke up at 4.45 am with wet underwear and when I got up out of bed a little burst of fluid leaked down my leg. I didn't have any pain associated with it and I had a shower, but something didn't feel right. I trusted my instincts, even though I was worried about over-reacting and rang Mater Mothers Pregnancy Assessment Unit (PAU) and was advised to go straight in.
 
It was confirmed that my waters had broken and I was completely in shock and utterly scared. I was admitted to Mater Mothers Level 9 Antenatal Ward at around 2pm and what I didn't know at the time is that Bed 906 would be my home for the next 10 weeks.

And so the journey began of my time between 'those four walls'. The first few days I had no idea what was going to happen, I was in full survival mode.  

In hospital, I got myself into a strict routine, I knew what times food services would be delivered - breakfast between 7 and 8am, morning tea at 10am, lunch around 12, afternoon tea at 3pm, dinner at 5 and supper at 7pm. It would really throw my day out if anyone was late (ha!) such is the insanity of being institutionalised.
 
I would wake around 6 am, breakfast would come at 7 am, I would shower after that and take my daily walk up the hall to the parents lounge for boiling water and have my Mama Body Soothing tea, I would put my oil diffuser on in my room, my obstetrician would come each day around 8 am, followed by observations from the nurses, then morning tea at 10 am. I'd watch some TV or I'd have occupational therapists, physiotherapists, ward stewards, social workers, cleaners and always my regular four hourly obs with the nurses.

All of these people became friends and knew me on a first name basis, especially the ward steward who would sit on my bed and talk to me each day. During the week when everyone was at work and I didn't have as many visitors I'd do mindfulness colouring-in books, writing, attempt to read, watch television and EAT. It's funny how I managed to fill each day. Being institutionalised can send you a bit batty so it became all about the little things and creating a routine was important.

As my time in hospital went by I started to have trouble breathing, I was worried about every little movement, pain and change...it was hard to stay relaxed. I was doing everything I had been taught - sleep meditations at night, guided pregnancy meditations during the day, diffusing oils in my room, trying to stay occupied with magazines/tv/guests and sometimes it's difficult to switch off the thoughts, even if you know deep down it's only anxiety.

A social worker visited me, a physiotherapist to help with movement while on bed rest and an occupational therapist to assist with the sudden life change. I was being supported in every way possible.  I honestly can't praise the team at the Mater enough and my obstetrician who even cooked me brownies while I was in hospital!

Even though I managed to maintain my sanity during my time in hospital, I cried. A lot. I was scared for my baby's life, how we would cope if we lost her or if she was born with a serious illness. I was worried about her long term health prospects. None of it was easy. It was scary.

There were many good and bad days during my time in hospital, including a number of trips to the birthing suite when our baby's heart rate would decelerate, magnesium infusions, steroids, antibiotics, constant fluid loss and bleeding, lack of sleep, so many scans, blood tests and observations.

The day Madeleine was born I had a swab taken to check for infection because I hadn’t been feeling well. Mum, dad and Aunty Sandra had come to visit and were with me for the scan which showed she had stopped growing. The pool of amniotic fluid was also down to 1.3 cm. My obstetrician had always maintain that while our baby was still growing, the best place for her was inside – now that her growth had stopped, it was time.

From the moment I found out I was delivering that day, my body went into a state of shock. The anxious convulsions continued as Mark and I got into our theatre gowns. Some of the midwives that had taken care of me came and hugged me and said goodbye.

So at 33 weeks, at 4.11 pm Madeleine Jane Metassa was born. I went to recovery and a couple of hours later we went up to the ward via Neonatal Critical Care Unit (NCCU) where I got my very first look at my daughter.

She was 39 cm long, 1.3 kgs but so incredibly cute even though she looked a little bit like a gecko! She spent five and a half weeks in NCCU. Mark and I were given a tour of NCCU while I was on bed rest and we talked at length to a nurse about how we might feel and the struggles we may encounter. They had told me that the day I leave hospital and go home would probably be one of the hardest days because I would be leaving Madeleine at the hospital and wouldn't be walking out with my baby. They were right and I cried in the NCCU corridor!

Madeleine was a superstar in NCCU, she quickly went from being on CPAP to low flow oxygen, moved from the Neonatal Intensive Care Unit (NICU) to special care. We were told that she had a small heart murmur (we would have to get that continually checked with a heart specialist), that she would need to go home on oxygen (this would be managed by a lung specialist) and I would do monthly overnight sleep studies in hospital to monitor her lung development.  In special care we tried to get her to breast feed but that proved very difficult because of how tiny she was and her inability to suck properly. I expressed every 2-3 hours the entire time she was in NCCU (either beside her cot or at home). We took her home on the 11 December 2016, just in time for Christmas.

Now at 16 months of age she's only 8 kgs - but she is the most beautiful, smiley girl you've ever seen!

I had this vision of what my pregnancy would be like. I would maintain my existing exercise regime, I would keep up my healthy eating habits, I would be a glowing pregnant woman and just grow a small basketball out front and keep all of my other dimensions, I would have an amazing pregnancy photo shoot, I had planned my baby shower down to every fine detail, I would look and feel amazing, I would carry to full term and then I would bounce back to my pre-pregnancy body in no time....... Boom...... what grand plans!

I don't know if I could say that I've come through all of this unscathed, because my life has changed so much. Motherhood is really hard and it's been very up and down, especially the first few months at home with Madeleine on oxygen and then becoming a single Mum when she was 8 months old. Madeleine still has health challenges because of her lungs and susceptibility to bronchiolitis and we've had a number of hospital stays because of this.

One thing that gets me up each morning (and through the night), even though I'm tired–I feel such pure and honest love every time I look at her, hold her or even think about her. I get emotional any time I think about my pregnancy, my time in hospital, becoming a mum, her time in NCCU and the 16 months I've spent with her which have been challenging to say the least, but so beautiful. It has been a roller coaster, there have been many tears, hospital trips, development clinics, paediatrician appointments, doctors, specialists etc… but I just love her so much it’s ridiculous!"