Online Community for High-Risk Pregnancies

Today we launched an online Facebook Group 'Tiny Sparks WA High Risk Pregnancy Support Group'. The aim of the group is to provide a network of parents who have been or are currently facing a high-risk pregnancy. Families can share information, ask questions, be a listening post, and provide general peer support in what is a very lonely, scary time.

We hope you will join our community if you have been or are currently facing a high-risk pregnancy. Note that membership of this group is subject to approval by one of the Administrators, a Tiny Sparks WA volunteer. If you are not added by an existing member, you will receive a private message requesting you to provide background as to why you wish to join. Please check your 'Other Messages' folder and respond as soon as is practicable.



Affirmation

Affirmation

noun

1  The action or process of affirming something.

2  Emotional support or encouragement.

When things become challenging, whether you are on bed rest or in NICU with your baby, it's important to stay positive.  This is often easier said than done.  We have developed a series of affirmations which you are welcome to download, print and share.  We hope that they help you through your journey, especially when times are tough.  Click on the image below to download all 9 of the affirmations.

"Code Blue" Olivia's Birth Story

On Boxing Day 2011, less than four months after our wedding, my husband and I discovered we were expecting our first child. We were very fortunate to have fallen pregnant during our first month of trying.

Michelle and Daniel excited to be expecting

The pregnancy was relatively smooth sailing; I had very little morning sickness, kept active, and aside from tailbone pain developing from approximately 21 weeks I had no other complaints and no complications.

In mid-May at 24+5 weeks, not long after arriving home from shopping for some final nursery items (organised well ahead of schedule), I started feeling some cramps and felt quite sore. Regardless of whether I was sitting down, lying down, using heat packs, or in a warm shower, the cramps kept coming with pain radiating down my legs and around to my back. I started to suspect these weren’t Braxton Hicks, but as a first time mum-to-be I wasn’t sure. I checked for my symptoms in one of my pregnancy books, which confirmed that I was right to worry.

I called SJOG Murdoch (where we were booked to have baby) and the midwife said it was probably nothing (she suggested ligament pain or Braxton Hicks), but to come in anyway for some reassurance, and so we went straight there.

Michelle 24 weeks pregnant

When we arrived at SJOG Murdoch a midwife took me to a delivery suite, because it was the easiest place to do a few checks. My obstetrician was on holidays at the time, but his practice partner had just arrived at the hospital to deliver a baby, and so popped in to see me after the midwife who examined me initially suspected I was having contractions. The obstetrician took only a couple of minutes before telling us that I was definitely having frequent contractions, that we needed to be transferred to KEMH right now, that there were going to give me a steroid to help my baby’s lungs should she arrive early, and administered some nifedipine to try and stop the contracting. We were told that even if everything calmed down we would most likely be at KEMH for 1-2 nights for observation and the second dose of the steroid, so we went home (which was only 5 minutes away) and picked up the hospital bag (yes, 3.5 months ahead of time I already had one packed) and headed to KEMH ourselves rather than waiting at the hospital for an ambulance. In retrospect, this was a sure sign that were completely oblivious to the potential seriousness of it all, and still in shock from what we had just been told.

It was a very surreal car trip and even more surreal when we arrived at KEMH. We initially went to their emergency department only to be told to head up to the labour and delivery ward; that was all a little bit too real! At the labour and delivery ward we filled out some paperwork and waited briefly, then they conducted a fetal fibronectin test (which can predict immanency of arrival in some cases). The test came back negative and the midwife suggested that this was a positive sign. I had some more nifedipine administered and some panadine forte; after some hours the contractions started easing and I was transferred to a ward late evening. My husband left to go home and sleep and I settled in for my first night in hospital.

The contractions stopped overnight, I called my husband the next morning to discuss what he was going to do for the day and when he was going to come in, but whilst on the phone to him I could feel some bleeding start and what felt like a clot passing. I told him that he had better get in ASAP and hung up to call the bell for the midwives’ attention.

I had elected to be a private patient the previous night when we were being admitted and we were offered a few different consultants (as my obstetrician was on holidays). I knew nothing about the system or that the specialists seeing the public patients were amazing, but after discussing it with the midwife we chose Dr Wu, a decision I will forever be grateful for!

Dr Wu came in as soon as the ward called him that next morning and he sent me for a detailed ultrasound. The scan showed I had a large clot (approximately 8cm) behind the placenta. They also took baby’s measurements and told us that she was about 690g +/- 70g, a little on the small side for her gestation. Dr Wu said I would need to stay in on bed rest, in hospital, for at least a week, and have another scan at the end of the week to check baby’s progress and to see if there was any change to the clot. It could grow, stay the same or hopefully, be reabsorbed. There is no explanation as to why the clot may have occurred.

The week of hospital bed rest was rather uneventful and aside from the slight twinge which most pregnant women get anyway, there was no more bleeding or contractions for the next few days. Baby and I were monitored frequently and there was nothing to suggest catastrophe at that stage.

During the week a neonatologist comes by my room and explains to my husband and I what would happen if baby arrived then (being 25+0 weeks at the time he saw us), or at 26 weeks etc. He explains that baby would have had only a 50% chance of survival if born at 24 weeks, and slightly higher if born at 25 weeks. He also confirms that baby’s estimated size is on the smaller end of the ‘normal’ scale for my gestation. We both think “well that was very informative, but that’s not going to happen to us”. We are both still clinging to hope that reabsorption of the clot will happen and that no further contractions during the week has been a good sign.

On the Friday evening nearing the end of my week of bed rest, my husband decided to pick up some pizzas after work, as I was quite tired of the hospital food. I shower, wash my hair and actually apply makeup for nearly the first time in the week and eagerly await his arrival! However by 5:30pm I start having some bad cramping and tightenings that are coming very quickly. I wait approximately ten minutes before deciding to press the call button as I was hoping they would pass, but they are not going away. It takes a few minutes for a midwife to get to the room, but as soon as she walked in I could feel myself starting to bleed heavily. She immediately called the obstetrician, Dr Wu. Over the phone Dr Wu instructed the midwives to hook me and baby up to monitoring, and says he will be in as soon as he can. Baby’s heart rate looks OK, but the bleeding and contracting is becoming worse.

A little after 6pm my husband arrived and I told him to eat his pizza, because there’s not much he can do!! We were extremely worried though as the pain was very intense. Dr Wu arrived at approximately 6:30pm; he quickly assessed the situation and said that I would need to go down to the labour and delivery ward for closer monitoring, but that he would put an IV in my hand in my room whilst the midwives sort out taking me down there. He popped in and out of the room over the next 5 minutes getting bits and pieces but finished inserting the IV relatively quickly. The pain is extremely intense and has progressed from being able to be distinguished in to separate contractions to one constant contraction. The bleeding was heavy but my ability to pay much attention to it was being impacted by the intense pain.

Dr Wu then went out to find a portable ultrasound machine to use as we were still waiting on the OK to proceed down to labour and delivery (although only about 15 minutes has elapsed, not a great length of time), whilst he was out of the room one of the midwives asked the other to help her with the monitor reading baby’s heart rate. They tried moving it a couple of times and then one of them went to find Dr. Wu after the younger of the two asked the other 'what do we do now?' No one tells us explicitly what is happening, but we knew it couldn’t be good. Dr Wu came back in and explained that baby’s heart rate had weakened, and then excused himself again to check on when we could be transferred to labour and delivery. He is gone only a minute, and while he is out the bleeding intensified very significantly, I could feel it, but I couldn’t see what was going on. The pain is still extremely intense and constant.  The midwives were becoming noticeably worried and press the emergency call button. Dr Wu and some more midwives come back in to the room; Dr Wu immediately asked a midwife to call a code blue. “Code blue medical and paediatric, caesarean, ward 5” was called over the PA system to the entire hospital. I would later find out I was having a complete placental abruption.

What seemed like the whole ward’s worth of staff rushed into the room. There was no time to get a trolley for theatre, they took the whole bed and we are out of the room within 60 seconds after disconnecting me from everything that I had been hooked up to. Someone ran ahead to the lifts to insert the key so that they could stop a lift and have it run express from ward 5 to the theatre floor. My husband runs beside the bed and he tells me he loves me, I tell him I love him too and I started crying. I could see the lights rushing by overhead and the terrified look on a man's face as he moved out of the way. I felt like I'd been transported in to some scene from a movie. The lift stopped at the theatre floor and we were met by more staff that ran me through a set of doors into a theatre, they do not pause to have us say goodbye or tell my husband he can’t go in. One midwife stays behind with him to explain it once I am in.

Olivia at birth

Once inside I was transferred to the operating table, they tilted it slightly and I could hear what could have only been blood falling to the floor. A midwife sat up near my head and started asking me my name, when I last ate, and if I was allergic to anything; they wrote all this on a whiteboard. I could see Dr Wu out of the corner of my eye getting gowned up. I had a sheet placed over me and some liquid rubbed over my stomach, a catheter inserted and it seemed it was all systems go. The only person who is not yet there is the anaesthetist, (although it has only been a minute or two) and the midwife sitting at my head turned to me and said ‘they won’t start until you are asleep’. The anaesthetist rushed in, checked the board, and then told me ‘this will hurt, and you will feel like you’re choking’. It hurts more than all the pain endured up to that point and the last thing I remember is feeling like I was choking. I was administered a ‘rapid sequence induction’ general anaesthetic through my IV line, used when there is insufficient time for other anaesthetics, and I was not awake to see Olivia’s birth.

At 7:04pm, Olivia is born weighing 635g and measuring 32cm long, with an APGAR score of 5 and requiring immediate intubation to stay alive.

Read Part II - Her Battle Begins - Olivia's Story (The first three weeks of NICU)


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Twins!

Guest post by Katrina B.

All together in the nursery, the day they came home.

All together in the nursery, the day they came home.

'Oh, I didn't see this coming...'
Those were the words from the sonographer that my husband and I will never forget at our first ultrasound viewing, which displayed two tiny hearts beating away. It was the biggest and best surprise of our life - we were expecting twins! 

As beyond exciting as this news was, it also brought with it a sense of concern too, as we were immediately told that as I was pregnant with multiple foetus, it was a high risk pregnancy, as not only would my body be carrying the pressure of two babies at once, it also brought an increased risk of pregnancy conditions to the table, as it put extra stress on my organs, for which I was checked every two weeks at King Edward Memorial Hospital, where they specialise in high risk pregnancies. Being identical twins, I was also having ultra sounds every two weeks (that part I loved - being able to see my babies so frequently!) as well, to ensure I wasn't developing Twin to Twin Transfusion Syndrome, where identical twins can receive too much or too little of nutrients, as they share the placenta.
Both of my boys were developing extremely well and my doctors even thought I'd make it between 36 weeks to full term with them and I was really beginning to see the picture in my head of sitting there in a hospital bed, cradling both babies at once - I couldn't wait to have my arms full of love.

At one of my usual appointments, I knew something was up as soon as I saw the look on my doctors face after looking at my routine results, and after half a day of many tests, I was told I had developed a pregnancy condition called pre-eclampsia, that my organs were starting to shut down, that my babies would arrive in anywhere from a few days to a month, so I was given a shot of steroids to help their lungs start developing sooner and told that a hospital bed on the ward was currently being prepared, where I'd stay until my babies arrived. I still really had no idea what was going on, it was a lot to process, I had nothing with me, nothing packed and was thinking of everything I now had to cancel (logic went out the window when the confusion came in!), including the baby shower my sister had organised for the next week. 

My husband and mother were amazing and brought me what I thought I'd need for the night and arranged to bring the rest the next day and got me settled into the hospital room, with my husband staying with me until late, as I tried to process the whirlwind that was that day. The next thing I knew I was woken in the early hours of the morning to my waters breaking where shocked nurses and doctors realised these babies were coming fast and that there was no time to give a second shot of steroids to help with their development. Two and a half hours after my waters broke, my beautiful tiny babies had arrived via a natural birth at 30 weeks, with doctors allowing me a swift kiss before they were taken to the NICU. The rest of the day was a blur, as I was taken to theatre to have excess placenta removed, then to to the Adult Special Care Unit (ASCU), as I was still in a bad state from the preeclampsia, where all I remember is begging to see my babies through states of being 'out of it'. 12 hours later, my husband, who had been shuffling between the NICU and being by my side with my mother all day, was allowed to wheel me down with my oxygen on, accompanied by nurses. It felt so odd being wheeled up to a box and being told that was your baby was inside there, hooked up to all sorts of wires and contraptions, then off to another section to do the same with your other child. I remember being worried that being separated after living in each other's space for so long, that this would cause extra stress on their tiny bodies. 

Just before the boys were ready to come home, that magic first 'double cuddle'.

Just before the boys were ready to come home, that magic first 'double cuddle'.

After several days, I grew strong enough to leave ASCU, then to the maternity ward and after a week in hospital in total, was allowed to go home, where I remember feeling so strange and extremely empty as I walked into our home, where just one week ago I had left with a belly full of babies, expecting to be home in a couple of hours, to coming home a week later empty handed for a while. Everyday I would travel to the hospital to be by my boys' side to encourage their strength, let them know it was going to be ok because mummy was there when she could be and to be there for the light care taking duties the NICU team would allow us to do, which made me feel like a 'real' mum. I was fortunate enough that the boys were just around the corner from each other, so I never felt too far away from either baby, but when one of my twin's was transferred to a different nursery when he started getting stronger before my other little man, that's when I felt unbelievably conflicted. Every day I spent approx. 10 hours at the hospital, but I never felt I was there enough for either of the boys, as the whole time I was going up and down the hallways trying to work out 'who needed me more at that moment'. Every time my eldest twin (by eight minutes!) progressed a little further I was so proud of him, but felt bad for my baby back in the first stage. Every time I was able to have the immense pleasure of holding my babies during kangaroo care, I was so trying to be in the moment, but I couldn't help but feel guilt for the baby that wasn't being held. The NICU staff were so incredible in every aspect, even  including helping me schedule cuddles with my boys between nurseries, feeds when they began to breastfeed and timed the care duties as much as they could so that I was able to help out with each baby equally. Only the parents and grandparents of the babies were allowed in the NICU and as my husband was having to work long hours, a lot of the time my wonderful mother was allowed to go to one nursery briefly while I was in the other when things like head scans were happening at the same time. 

After 3 weeks at KEMH, my boys were transferred closer to home in the SCN of Joondalup Health Campus. My boys were able to be in an open bassinet at this stage, and for the first time since birth, my boys were reunited and stayed side by side in the double bassinet. It was an absolutely magic moment to see them right next to each other, being able to compare 'how identical' they were, to witness them interact and to sit by their side at the same time. Just before they went home I experienced my very first and very longed for 'double cuddle', yet another incredible experience and, at 36 weeks gestation we walked out of hospital with our beautiful boys in tow, completely beaming and about to embark on the full on, but blessed journey of feeling like 'real' parents, raising our twin boys at home. 

Family pool time a couple of months ago.

Family pool time a couple of months ago.

That day was 2 years ago on the Friday just gone, and we now have two healthy, happy, cheeky sense of humoured, boisterous toddlers who bring an abundance of love to our lives everyday. For this, we are eternally grateful to the NICU/SCN's of WA for the tireless work they do day in, day out for all our babies, it brings home why it's so important to have associations such as Tiny Sparks, whose aim is to support the work of these hospitals, other associations around WA that help families and their different situations, such as the Perth + Districts Multiple Birth Association and of course, the families who experience the high risk pregnancies and what it means to have a child/children in the NICU/SCN.


By sharing your own story it helps others to know that they are not alone.  If you would like to share your high-risk pregnancy story please visit this page, or if you would like to share your NICU/SCN story please visit this page.


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PTSD - One Woman's Battle

Guest blogger - Tracy W

Tracy W.jpg

I am a mom to two preemie babies and i deal with PTSD almost everyday. It happened just over two years ago. You know those moments you see on TV when the world keeps going but you stand still, that's when it all started for me. My first baby came at 31+6 weeks. I went into spontaneous labour and it was so quick they couldn't stop it. My labour was normal and my son was born after just 4.5 hours. All seemed ok considering he was early. The paediatrician said to me he was fine, just needed a little extra help with his breathing and had to stay in special care nursery for awhile so he can get a bit bigger than his 2.2kg. A couple hours later I was living my worst nightmare. I relive this moment still to this day. I went to see my precious boy and as I walked in the curtains were drawn around the high care incubator with doctors and nurses rushing in. We were ushered out of there very quickly. They all looked terrified. That's my heart sank so deep. I just knew it was my boy even though I was still praying it wasn't him. After what seemed an eternity a doctor came to my room to discuss my son. I will never forget how calm he was when he was describing how my sons right lung had collapsed (pneumothorax). When they tried to fix it, he had a very rare complication from the procedure and it caused his other lung and heart to pull over towards the collapsed lung (tension pneumothorax). They had to put in a drain, get him stabilised and send him to the NICU at PMH. It took hours to get him stabilised and I still vividly remember watching them put him in the ambulance and take him away. He was only a few hours old and they were taking my baby away with all these tubes and wires hooked into him. This is when the world just stopped for me and in many ways it still has never really started back up. 

NICU was a blur of emotions, mostly I remember feeling such guilt and absolute helplessness. I have so many flashbacks to this time of my life, strange things like taking a shower will send me straight back to the shower in my room at PMH. That feeling of helplessness washes over me with every flash back. Even though my son is now a happy healthy 2 year old I still have these horrible flashes. I suppose it's because of what I went through but also because in many ways I still blame myself. 

I fell pregnant again when my son was just over 12 months old. I hoped this pregnancy would be different and boy it was, but not in a good way. My obstetrician was watching me really closely and at the first sign of anything happening she put me on progesterone. That was fine I could deal with that, until I started to go into labour at 28 weeks. I was put on bedrest, had steroid injections, numerous hospital stays/visits, heaps of medication and constant tightening pains for my last two months of pregnancy. Several times I was told I was about to have my baby and to expect that she will be going to NICU. However we defied the odds and made it to 36+3 weeks. This time my labour was only 1.5 hours and I nearly had her on the side of the road. We had 000 on the line and my doctor waiting at JHCs front entrance. She was born and thankfully she was perfectly healthy. 

I had to face my worst fears during this pregnancy. I knew I was a ticking time bomb and I had time to prepare for another NICU journey. This was probably worse because I knew how hard it would be. I had 8 months of stress, fear, anxiety and pain but somehow I remained determined to keep her in. 5 months on and people expect me to be back to "normal" but they just have no idea. Unless you have given birth to a preemie and had a stressful high risk pregnancy you probably have no idea what I have gone through. Yes both my children are healthy but I have had to face the prospect of loosing a child. You never forget that feeling and I really don't know if I will ever get over it. All I know is that no matter how much I try I can not bottle these emotions up, I need to face my PTSD even though I don't want to. I now know I am not alone in this journey.


If you or someone you know may be suffering from PND or PTSD you can find more information on our website here.