Guest Blog by Rebecca F

My name is Rebecca and my little miracle is Amelia (or “Millie” as she is known by many!). She was born in 2014 at 28 weeks weighing just 795 grams. I hope by sharing my story I can help more families in our community dealing with a traumatic pregnancy or birth (or both), and I believe this will be very therapeutic for me to write also. My husband and I had been married for 2 years before we decided the time was right to start trying for a family. I was 28 and my husband was 37 at the time. What I initially thought would be a beautiful and easy experience for us turned into a very difficult and emotional road when we were still trying to conceive 5 years later. Being a little bit of a control freak, this was very hard for me to deal with, and being an early childhood teacher made it all the more difficult as I was surrounded by darling little children day in day out. IVF became the only option, and we were so excited when the day finally came – we were pregnant!

Such wonderful joy unfortunately became overridden with a number of complications throughout my pregnancy. I had a sub-chronic hematoma haemorrhage at 12 weeks that was so large I thought I'd lost the baby. To make sure we would be able to get an ultrasound that night, we had to go to SJOG Murdoch where thankfully the sonographer was already there, having been called in by another middle of the night emergency. A trip to KEMH the next day confirmed the good news that the bleeding had resolved itself and she stayed put! I was also told I had a decent size fibroid, but that it should not cause concern. The next hurdle we came across was at our 12 week scan. The ultrasound showed that our little baby looked great (measuring a little small, but fine the sonographer said), but then we got a huge shock as the blood work for Downs Syndrome came back as High Risk - 1 in 100 for Downs Syndrome and another Trisomy “Patau’s Syndrome”, a condition not conducive to life. I was so scared, but there was something in me that said “No, not my baby, I will not accept this”. I quizzed the clinic where the bloods were sent and found out it was a low “papp-a” result and my IVF status that put us into this level of a high risk category. I became quite obsessed with researching low “papp-a” and found out on a KEMH medical document online that it can often indicate a compromised placenta, in uterine growth restriction, and preterm birth. So I knew in my heart, something was going to happen, but not Downs, not Patau’s. No.

Amelia at 12 weeks gestation - this was video footage and she was really moving!  We called her our little tiny dancer :-) — Amelia at 12 weeks gestation - this was video footage and she was really moving! We called her our little tiny dancer :-)

I was advised to do an amniocentesis, but I refused, not wanting to put my baby at risk, especially if there was no need to. I made the decision myself to do the 2nd trimester blood test at 15 weeks. That test came back clear of Downs, but shockingly it also came back as our baby having a 1 in 4 chance of Spina Bifida. Once again I refused to accept these results, and questioned the test . I found out it was another placenta related blood issue I had, so I spoke with the wonderful doctors at Western Ultrasound for Women and we booked me in for a 16 week scan with an amazing specialist there. I felt immense relief when he told me my baby was absolutely fine, that he doesn’t often get such clear images and he could see she was developing perfectly.... and it’s a girl! It was such a wonderful day that I won’t ever forget.

Life just wanted to keep testing us though, and at 23 weeks, I started having regular contractions. I was advised to go straight in to KEMH for monitoring. I had a test that came back negative that I would go into labour in the next week, and the next day went to Kaleeya Hospital where I was booked to give birth, to be assessed for a plan. My husband and I went through a traumatic experience that day when we were told if I go into labour nothing could be done for my baby. Needless to say, that was not good enough and I demanded a different doctor, in fact I demanded to see the senior doctor as I was a high risk patient. I would not accept such an attitude, especially when we had come this far. I was put on medroxyprogesterone acetate pills which I was not keen on at all as my pharmacist was very uncomfortable giving it to me knowing I was pregnant, and advised it was a high risk drug. But, after having a bit of a melt-down about it, I had to trust the head obstetrician at that point as my cervix was shortening and I was told that it was vital to keep taking the pills to hold off the contractions. My baby was still measuring small, but no one seemed concerned about it, so I wasn’t either. But I still had the low “papp-a” in the back of my mind.

All seemed fine from that point, I even had an early baby shower that was so lovely. I was able to enjoy my pregnancy for really the first time since all of these complications arose. That was until I was thrown another curve ball, this time a huge one. I started having some what I thought of as general pregnancy woes. At my baby shower I had tightness in my chest that I thought was nervous excitement. Then I had it again in the middle of the night that was strange. The next day I saw spots and was dizzy, but I thought it was because I was hungry and had just done the gestational diabetes test. But then I remembered I had been very itchy and my liver results came back elevated. The GP hadn't pushed for anything to be done at the time but when I put it all together I was worried. The final indicator something was not quite right was when my feet and ankles ballooned within a couple of hours, very unusual for me. So with the push from my mum, I called the midwives at Kaleeya and drove in by myself for a quick check that night before my antenatal class while my husband was at the gym.

I was instructed to do a urine sample and then lay on the bed while the very efficient midwife took my blood pressure. She had a funny look on her face and said she would just take it again. I knew something was wrong when she wanted to check one more time. My blood pressure was 190/120 and I had 4+ protein in my urine. The midwife looked panicked and I started to feel really scared. I was told to stay on the bed as everyone starts rushing around me. I was given the steroid injection, a cannula was inserted, and meds after meds which didn't do anything to bring my BP down. My husband was called and he rushed in and I felt better knowing I had him there with me, we were in this together. I was then taken into a labour ward with a very caring nurse who did not leave my side and they called the head of obstetrics in. It was then that I was told I had severe pre-eclampsia and suspected HELLP syndrome. I went with that same lovely nurse in an ambulance and was rushed straight up to MFAU at King Eddies. I was there overnight with the thought I may need a C Section to deliver my baby at any time. Thankfully my BP came down a bit so I was brought down to a ward early the next morning and monitored. I was 27 weeks and 1 day.

The next day I had an ultrasound and was told my baby was measuring 24 weeks and was only 700 grams. The specialists were very concerned for me and for my baby and said we are playing a dangerous balancing game to keep me from having seizures or a stroke, and to try to grow our baby to a size that was not so extreme and fragile. I was put under the Gold Team and on complete bed rest, with a myriad of medications and injections to stave off the inevitable. I felt a bit like a pin cushion, which I should have been used to from all the years of fertility treatment! My various work commitments were cancelled, including teaching roles within the University of Notre Dame, a part time role I had started that year at a lovely little local primary school, and my musical performance schedule was wiped. I didn’t know at the time, but I would not be leaving those hospital walls before my baby was delivered. I noticed the growing intensity in the tense look on my husband’s face and saw how stressed my family were. I kept thinking, no I have to be strong. Everything is going to be ok.

The paediatricians from the NICU and special care nurseries met with me a few times, but I couldn’t really comprehend what was happening. I missed my little dogs, I missed my home and husband. I kept asking the doctors when I would be able to go home. I thought that I would somehow be able to carry on as normal when they could get my BP down and I would get back to resuming my life. I know now I was in complete denial and was only focusing on what they were telling me about the baby, and disregarding what they were trying to stress to me about my condition. Each time they said “No Rebecca, you need to know you will not be leaving here don’t you? The goal is to get you as far along as we can, but it’s like a knife edge. We have to be very careful. The only cure for pre-eclampsia is delivering the baby”. It was then I was also diagnosed with cholestasis, explaining the extreme itching in my hands and feet. As well as the severe pre-eclampsia, cholestasis can be very dangerous for the baby and it was something my GP should have realised and acted upon from my earlier elevated liver tests.

I used the time I had on bed rest in Ward 3 to read everything and anything I could get my hands on to prepare me for a premature baby. I looked for information and stories about preterm birth and stories of survivors in Western Australia in particular, the locality made me somehow feel more reassured that if those babies can make it here in Perth, then my baby can make it too. I became obsessed with researching low birth weights and gestational ages, and that was when I remembered I had actually contacted Tiny Sparks WA back at 23 weeks when I first started having those contractions. Bronwyn Rose, chairperson, was so generous with her time, and answered all my questions as best she could, and provided me with a real sense of comfort. I am a big believer in a trouble shared is a trouble halved. I contacted Bronwyn again when I was admitted to KEMH with my pre-eclampsia and she was once again a wonderful support. Over the next week I would regularly look on the Tiny Sparks WA website and Facebook page. I am so glad there is now the Tiny Sparks WA High Risk Pregnancy Support Group as an amazing support to women going through very difficult pregnancies. If we can be there for each other in such times of need, we are in some small way also validating our inner strength and understanding. Sometimes we just need to be heard, sometimes we just need to share with those who “get it”…..

I got progressively sicker and sicker and ended up on oxygen, unable to breathe. On Day 6 I was rushed to Charlie Gardiners via ambulance for X-rays, lung scans and a heart echo and was found to have pulmonary oedema (fluid on my lungs). I was very swollen in the face and didn’t look like myself, I started to become scared about what was happening to my body, when before I was only worried about my baby. I had become completely “out of it” by that stage and slept through all the scans and the echo, I felt so helpless, and very vulnerable. My body was starting to show signs of severe distress and my BP was rising again, not able to be brought down. By the time I went back to King Eddies I was put into a bed in ASCU (the Adult Special Care Unit) and after realising a heart attack could be a real possibility, Dr Griffin and the Gold Team made the decision to do an emergency c section immediately. My baby girl Amelia was born at 11.30pm, weighing 795 grams. She was 28 weeks on the dot.

That concludes the story of my High Risk Pregnancy. The next instalment will continue with the emergency caesarean birth and NICU journey of my baby daughter. Thank you for reading.