· By Tiny Hearts Education
On Tuesday the 14th of April 2020, I attended my 20-week scan. My life changed forever this day. I went alone due to the Melbourne lockdown restrictions. I was optimistic, heading into the scan at Ferntree Gully Angliss, as I had my son there just one year prior.
We opted for the NIPT testing at 11 weeks as we really wanted to know the gender early as we had waited until 20 weeks with our first. Everything was looking great, the baby was growing on track, and we were expecting another little boy who was extremely low risk for any abnormalities. We were ready and excited for an adventure with our boys' only being 17 months apart.
The scan seemed to be taking a really long time, and I had noticed that he wasn't moving around as much as I remember with my first. I thought it was just because the girl looked young and was learning. There was another sonographer sitting on his phone in the room 'supervising her'. After 2 hours and her struggling to get measurements, I started to get a little nervous. My stomach was getting so sore from all of the pushing. She asked for help, and the experienced sonographer had a go. When he started having trouble and was measuring everything over and over, I knew something wasn't right. I noticed that my little boy was measuring behind. He explained that they think he is way too small for 21 weeks and was measuring under the first percentile and was showing IUGR (inter uterine growth restriction). They noticed no nasal bone, and he had echogenic bowels. I was told to wait in the corridor while they spoke to a doctor. It seemed to take forever, and two other pregnant women waiting while my appointment went overtime, looked annoyed as I stood there. We could all hear him on the phone to the doctor explaining what he had found. I was told to head down to get a blood test for infections called the TORCH test and was then told to head up to FMAC (fetal monitoring).
The midwives were lovely and told me that they were worried about my baby and that they wanted to send me off for a specialist scan to clarify things. At this point, I was still pretty naive about how serious things were. I had a perfectly healthy first pregnancy, so I thought everything would work out. I headed home, calling my husband to tell him why my scan had taken over 5 hours.
The next day, Wednesday the 15th of April, I got a call from a genetic counsellor from Eastern Health. I had just got out of the shower and was running around after my 1-year-old. I don't think I fully grasped the seriousness of the call. She had booked me in for a specialist scan at Box Hill that afternoon and explained that they thought our baby might have an abnormality. She reassured me that they would pay for the scan and that we might be advised to get an amniocentesis test. I was so confused because I naively thought that the NIPT test covered quite a lot.
My husband was allowed to attend this scan, and he rushed home from work to come with me. Before heading in for the scan, we sat in a little room where the nurse explained the amniocentesis and said that if things were not looking great on the scan, it was up to us if we wanted the extra test to find out more. We read through the information, and I still was quite positive. We went in for the scan, and within a few minutes, I could tell the specialist had noticed something. He didn't say anything. Looked around for a few minutes more then wrote some notes on his machine while we waited in silence.
He then turned to us and said: "your baby will not survive another few weeks."
I instantly started sobbing. I was so confused. He showed us that the cord was wrapped around his neck a few times and that he had echogenic bowels and seemed very small. He also picked up that the placenta was quite large and had cysts on it. Taking in this sudden news, we went back to the little office to sign paperwork to get the amniocentesis done straight away. It can be risky, but we figured if he wasn't going to survive, we wanted to know why. The procedure was quite painful as they stuck the needle through my belly into the amniotic fluid. I closed my eyes and wiggled my feet. We then walked to the car, and I broke down calling my Mum saying we were heading over right away. We weren't supposed to as it was lockdown, but I just had to see her.
The following day I got another call from the genetic counsellor. She had heard the news from the specialist, and we were booked in to meet her at Ferntree Gully Angliss to go over our 'options'. She told us that the TORCH blood test and amniocentesis results could take up to 2 weeks. In the meantime, we had to just wait.
On Monday the 20th of April we met with the lovely genetic counsellor and headed to a spare hospital room to have a chat. They had no meeting rooms left, so that was where we had to go. We discussed our baby's chance of survival, the scan results and what the TORCH test was and what we could find out from the amniocentesis. Her words hit us like a ton of bribest-case best case scenario would be that he passes on his own." We talked about things that I never knew were talked about. What to pack in a hospital bag for this situation, how termination works and at what point it can be done, the labour and birth process whether natural or induced and what happens once the baby is born. It was hard to process everything.
We made a plan to get 2-3 check-ups or scans each week as the thought of him passing and not knowing for a week, or two was too much to bear. In the meantime, we sat around at home, during the lockdown, waiting for results.
Friday the 24th of April we had a check-up at Angliss FMAC, and I would be taken in to check baby's heartbeat. It was always a surprise, but he was still ok. Tuesday the 28th we headed to Box Hill for a check-up specialist scan. The genetic counsellor would organise every appointment for us and attended all of our Box Hill scans to explain things as they happened. This scan confused us. The baby had shown two weeks growth as he should have since the last scan, and he still had a heartbeat. The cord was still around his neck, and the amniotic fluid seemed low. This specialist told us that if we made it to 28 weeks, it would be a miracle and that he could have a chance of surviving. We were so confused about this news and slightly angry. Why would the first specialist tell us there is no chance if there could be now? I had a little more hope.
Our results all came back at the end of April. The TORCH blood test showed no infections and the amniocentesis showed that he was completely normal. No abnormalities. We were so confused. What was going on? Why did he stop growing? Why is this happening to us? All of the doctors and specialists were confused too. We continued going to Angliss to check on his heartbeat and on Friday the 1st of May his heartbeat was a little slow when we first checked but then seemed ok after a while. I went home knowing in my heart that he was struggling. Our genetic counsellor booked us in to see Dr Lisa Begg the following week. She is one of a small group of specialist obstetricians in Australia who have obtained further training and sub-specialist certification in maternal-fetal medicine, which involves the planning for and care of high-risk pregnancies. We hoped that she might be able to give us more answers about the chance of our baby's survival. In the meantime, we waited some more. I packed my hospital bag just in case something happened, and I painfully put in a little teddy for our little boy.
On Sunday the 3rd of May, I started having quite a lot of Braxton Hicks. I had them early with my first baby, and this time around, I had had them a lot since about 15 weeks. These seemed to be more painful than I remember though. I ignored it because I had been told that it was more likely he would pass, and I would need inducing than me going into labour on my own. They were as painful as I remember being with my first, so we got my sister in law over to babysit while we headed to Angliss to get checked.
With my first, I got to hospital comfortably at 7cm dilated and this time around I think they thought I knew what was happening. I really thought I was in labour. The room was set up for delivery with the tiniest beanie and blanket I had ever seen. It was confronting. After reading my history, we had to discuss what to do if he was born. I was only 23 weeks at this point, and I learned that for them to use life-saving measures, you need to be 24 weeks. They checked his heartbeat, and he was fine, and they reassured me I wasn't dilated and that it must be Braxton hicks. The doctors and midwives were all so lovely and caring knowing my situation. I felt silly for wasting everyone's time, and after a while, we were sent home.
On Tuesday the 5th of May, I was still having painful tightening's, and I was so confused. My sister in law was still over as she knew something didn't seem right. I was moving around like I was in labour and she insisted we go back to get rechecked. I really didn't want to as I had already been checked and they said everything was fine. I had a small amount of blood which looked exactly like my mucus plug from memory with my first. Being a negative blood type, I headed straight back to Angliss, as any bleed in pregnancy needs an Anti-D shot. They checked me over again, did another speculum and reassured me that I wasn't in labour and that everything was fine. I had an Anti-D shot and headed home.
The next day on Wednesday the 6th of May we finally had our appointment with Dr Lisa Begg. We waited over 3 hours as she was running late and had many awkward stressful chats with other pregnant women asking how far along I was and how things were going. In the appointment, we heard his heartbeat and discussed our options. We talked about choosing between a late-term termination or hoping to last another few weeks and be transferred to Box Hill and then hopefully to either the Mercy or Royal Women's who have NICU care for if he is born alive. We were hoping on her opinions on his survival at this gestation, but of course, no one can ever know. How could we make a decision? He was healthy, normal and seemed to be still growing, so we decided to let him make the decision for us.
On Thursday the 7th of May, despite the lockdown, we decided to go to my Mum's for lunch. It had all been too stressful, and we needed to see family. On the way, we stopped at a shop to get a dog bed for our dog. As I walked about the shop, I struggled to hold my son. I had a very heavy feeling, and although we just got there, I had such a huge urge to wee. It reminded me of when I was 40 weeks with my first, but again I ignored it. We rushed out and headed to Mum's. I was still getting the constant Braxton Hicks that had been happening all week. We had been there for a few hours and had decided it was time to leave. It was time for our son's nap, so we packed up to get in the car. That is when things changed.
At around 3 pm, I stood up to fill up my drink bottle and felt a huge pop and gush. I yelled to my mum "I think my waters have gone." I rushed to the toilet and was shocked to see blood just pouring out. It wouldn't stop. I panicked and yelled for my Mum. I screamed for my husband to call an ambulance. Knowing my situation, we knew this wasn't good. I put a towel between my legs and laid on my parent's bed. I felt pressure in my bottom and was shaking with fear. They put my son in the cot for a nap, and we only had to wait 5 minutes for a MICA car and ambulance to turn up. Lucky we were at my Mum's as they could look after our son.
The paramedics headed up my parent's huge staircase and came in to see me. They were head to toe in all of the COVID protection gear. They rushed to put cannulas in my arms and started asking me lots of questions. The dilemma now was getting me down all of the stairs and down my parent's really steep driveway. I kept telling them I was fine and that I could walk so with the towel between my legs they helped me down the stairs and into a wheelchair. They wheeled me down the driveway and into the ambulance. With lights flashing, they got from Ringwood to the Mercy in about 15 minutes. I think they were more worried about the baby coming quickly than me.
I was taken into ER, and doctors and nurses checked my blood loss and asked me lots of questions. It was hard to explain all of the issues since our 20 weeks scan, and I was now 24 +1 trying to go through everything. We called the genetic counsellor and asked her to fax through all of our information. They were all rushing around, putting cannulas in my arms, checking my heart rate and blood pressure. I didn't find out how the baby was going for a while. I kept bleeding and needing to wee, so they gave me a catheter, so I didn't have to get up. They kept changing the pinky's (bed pads) as the bleeding wouldn't stop. At around 6 pm, all of a sudden, my blood pressure went really high, and they called a Code Blue.
Over 20 doctors, nurses and midwives came running in, and it was so overwhelming. I was shaking and had no idea what was going on. I was put on magnesium as they all stood around looking at the blood and my blood pressure, discussing what to do with me. After a while, everything calmed down. The bleeding seemed to slow, and my heart rate and blood pressure were better. Now was time to check on the baby. I was warned that he was most likely gone, and we had to wait for a specialist scan. I was too unstable to be moved, so we had to wait for two sonographers to come down to the ER to do it. Ironically, the main one was the same specialist who told us "your baby won't survive another few weeks." He remembered us as he read his own previous report. I braced to see no heartbeat. They put the wand on my stomach, and he still was alive. He had also grown since the last scan, and he said everything looked fine with him, other than the cord still being around his neck. He was shocked he had made it this far and was still alive, and so were we. We were still so confused, why was I bleeding so much?
At 7:30 pm, a neonatal specialist came in to see us, and we had a long chat about what we wanted to do if our baby was born alive. We discussed NICU, the long term effects on him if he was born this early and possible chances of disability. I felt like we went around and around in circles in this conversation as I had no idea what decision I was supposed to make. She talked about how if he is born alive, we could just hold him and wait for him to pass, or that they can do full-on measures to save him and see how he goes. She reminded us that being born at 24 weeks at such a small size could cause all sorts of long term issues. She explained that if he does live for a while, we won't know his actual condition and that you can't turn off life support at six months old just because they find brain damage or disability—one of the many confronting conversations we had to have.
At this point, I hadn't been checked to see if I was in labour and I had no idea if that would even happen. I was just bleeding, a lot. We ended up making the decision that as he was past the viable 24 weeks that if he was born alive, we would let them use any life-saving measure that they normally would use on a 24-week baby. The doctors used the term "no superhero measures." So he would be kept alive, but if he was really, really unwell at any point, we decided not to force more operations, procedures or 'help' onto him.
At 9 pm, I was then wheeled to my own birth suite, still not sure if I was in labour or not. I felt a bit calmer now and thought everything might be ok. The ER nurse handed over the information to a young midwife starting her shift, and I really got the vibe that she wasn't listening or taking it seriously. She was looking around and not paying attention to what the ER nurse was saying which worried me. The nurse left, and the midwife then started filling in paperwork. After a few minutes, I felt a huge gush of blood. I told her, and she casually changed the pinky, weighed it and gave me a fresh one. Back to her paperwork and I felt another huge gush of blood and clots. I told her, and I don't think she believed me. She changed it casually again. Weighing another 450-gram pad soaked. A few minutes later again, more blood. I couldn't believe it, and I started to get really worried. So did she. She came and looked, weighed it again and then ran to get some more doctors and midwives. They all seemed worried about the amount of blood. It was getting close to 2 litres lost already.
At some point in between all the bleeding, a doctor came in and talked about possibly having to do an emergency c-section vertically as I was bleeding so much. She wanted me to go into labour on my own so that I didn't have to endure a large vertical scar that could affect future pregnancies. Induction was discussed, and we had to make a decision and verbally tell her whether we save the baby or save me. That was so hard to have to do while so scared. We struggled to say to her after a minute alone that I need to be saved to be around for my first son. The doctor said she would be back in a bit to see how I was going.
At some point, I was checked for dilatation, and I swear the doctor said I was 1cm, but then she said no, you are not in labour. I think she just didn't want to scare me. My tightenings were getting extremely painful, and I kept telling the midwives, thinking I was having contractions, but they kept telling me that the blood was just irritating my uterus. As time went on, they got more and more painful, and I was stuck in the bed, unable to walk off the pain. My husband tried to get some rest, and I squirmed in pain as I thought they must be right, I wasn't having contractions. The blood continued. I soaked through a huge bed pad every few minutes. It was up to 3 litres blood lost now, and we had discussions of blood transfusions. I started asking the midwife for something for the pain. I didn't understand why it hurt so much. I had my first son with just gas and was walking around and in the shower. I just couldn't do this laying down and in this situation. I demanded something, although they still never acknowledged that I was in labour. I was given morphine through a drip. It didn't seem to do anything. As my husband rested, the nurses were setting up the room for delivery, which really confused me. They had the isolette ready for the baby and a lot of medical equipment. I remember seeing forceps and scalpels on a tray near me and started to get really scared.
At around 3 am while rocking side to side in bed in pain, the midwife was handing over information to another midwife. They were busy talking and giving me more pain relief. Something felt wrong. My face got all hot, and it went down the back of my spine. I tried to tell them, but they didn't notice me saying that something was wrong. I called my husband over, and he listened to me and tried to get their attention. I started losing my hearing, and my vision was going black. I started panicking and felt a massive blood clot shoot out. My husband yelled at the midwives to check me, and at that point, the heart rate monitor started alarming. My vitals shot up extremely high, and then all of a sudden, my heart rate had dropped below 20, and my blood pressure dropped to 10/60. They ran to the emergency button on the wall, pressed it and screamed Code Blue over the speaker.
Over 20 nurses, doctors and midwives ran to my room and were all crowded around trying to save me. I still couldn't see or hear anything, but I remember feeling like I was going to throw up and die. They gave me medication, and within half an hour, I started regaining consciousness. I was laying on my side still bleeding and had nurses trying to re-attach my cannula and blood was pouring out of my arm onto the floor. I then continued to roll side to side in excruciating pain, still bleeding and losing clots, and I asked for the gas to try and ease it.
At around 5:45 am, the pain became unbearable, and I recognised it. I needed to push.
I told the doctor, and she used a speculum to check. There was too much blood, and she panicked and checked with her hand and said I was 10cm dilated, but he was breech. She told me to wait, and she ran to call for all of the paediatric nurses and doctors as he still had a heartbeat. I struggled to hold on as I was left in the birth suite on my own with my husband. I needed to push, but I didn't want him to be born without their help for 1 second too long. They all rushed back in, and I instantly started pushing. He came in a few pushes. He was delivered breech, en caul (in the sac) and with the placenta. The doctor was shocked and said the placenta came out at the same time. It hurt just as much as my full-term baby the way he came out with the placenta, despite him being so small.
I saw the doctor break the sac as he lay in between my legs on the hospital bed. She unhooked the umbilical cord from around his neck, cut the cord, and he was run over to the paediatric doctors to be worked on. He was tiny. They worked on him for what felt like an eternity. He somehow survived the birth and still had a heartbeat. They intubated him and were talking amongst themselves. I remember all 20 or so of the midwives, doctors and nurses all silently watching and waiting. It felt like such a long time. I couldn't see him, so they quickly brought him over for us to look at, and then they rushed him out up to NICU. My husband followed them, and I was left in the birth suite. My bleeding had finally settled, and I looked around at a now empty room in complete shock.
Caden Hunter Boyle was born on Friday the 8th of May 2020 at 6:01 am. He was born at 24+2 weeks gestation, a tiny 424 grams and 28cm long.
I stayed in the birth suite for a few hours until I was transferred to the High Dependency Unit (HDU). In the HDU they checked on me all day and night every 15 minutes. I was so tired but couldn't sleep, and I still wasn't stable enough to go and see my new baby. At around 10 am, I was wheeled in my hospital bed to the Neonatal Intensive Care Unit. My bed barely fit through the ward, but I was too unstable to be put in a wheelchair. I finally got to see my baby. I was flooded with emotion as other NICU mums visiting saw me being brought in and I saw all of the tiny babies in the strange isolettes. It was a world I had never seen before, and I was scared. Caden was attached to so many wires and tubes, and he was so tiny. I had never seen a baby so small. He looked exactly like a baby, with perfect fingers and toes, but he was just small. I briefly got to put my hand on him gently. They had bubble wrap resting on his body to keep him warm. I was then taken back to my HDU room to rest.
Later in the afternoon, my husband came back. Due to COVID restrictions, he continued to get stopped at the front of the hospital and told he couldn't visit. We were not allowed any visitors in our whole time in the hospital. He talked his way in as the nurses and doctors thought he had every right to visit Caden and me despite lockdown restrictions. When he got in, we decided to call NICU for an update on Caden. As we went to pick up the phone, it rang. NICU was calling telling us we needed to come down right away as Caden wasn't doing well.
The nurses wheeled me down, still in the bed, and we saw Caden with bandages on his ribs. He had bleeding around his lungs, and they had to puncture them to try and help the fluid that had built up. We were warned we could be saying goodbye. The doctors told us that it is very common in babies born at this prematurity and we had to wait to see his progress over the next 24 hours. Heartfelt, which is a charity photography group, was organised to come and take photos for us that night at 10 pm. We really didn't want to but were reassured that it would be good for us one day. We agreed, and I could barely stand and had blood rushing down my legs after standing at one point in the photos. It was a bit too much for me, and I had to be taken back to my room.
Throughout the first night, I had help to pump milk every 3 hours, and they would take it to NICU for Caden to go in the fridge. He was way too small at this point to have any as his tubes were only 0.1mm thick so they couldn't even fit a drop of milk through it yet. I still needed to build up a bank of milk, though for when he was bigger. Each day and night, I would express and pump until my milk came in. After not breastfeeding my first, this was all new for me.
After three days in the High Dependency Unit, I was transferred to a normal maternity room. Yes, it was alongside other maternity rooms with babies in them. All night I could hear babies screaming while I was in a room alone. We got permission from the hospital for my husband to stay the night, even though restrictions said he wasn't allowed. I continued to pass large strange clots that seemed to be retained placenta, and I continued to have blood pressure issues and medication to help throughout my stay. On the 10th of May, I had just enough strength to go in a wheelchair or walk to visit NICU. I got a routine of pumping and taking the milk down to his fridge and visiting every few hours. I couldn't visit for long as every time I tried; I would struggle to walk back. We would stare at him through the plastic and occasionally and hesitantly place our hands over him for contact.
On the 13th of May at 9 am, the day I was finally well enough to be discharged, I had an iron infusion and got a phone call from the paediatric doctor in charge. It was one of many phone calls and meetings, so it seemed just like the rest. I finally thought that maybe I could be going home and that I would just need to work out a schedule with my 1-year-old to visit Caden in NICU for the next few months. He had made it a week, and we all continued to be impressed. He had lots of ups and downs and many procedures, blood and platelet transfusions and problems. We continued to be reassured that it was all normal for such a premature baby. This phone call though was for a meeting at 9:30 am, and I was told to make sure my husband was there. We had already had a few meetings with whole teams of people, so I thought this was like the rest. Before the meeting, I had an ultrasound to check for retained placenta. As I was in there, a doctor came to check on me and said: "Oh, I just did a scan on your son." He was getting a brain scan, and he had a few of them already, so I asked how it looked. She casually said, "it looks worse." My stomach dropped. She probably shouldn't have told me, and I instantly knew that this meeting wasn't going to be good.
At 9:30 am, we waited by Caden for the doctor in charge to come. He greeted us and took us to the 'Butterfly room'—this small strange room just outside the NICU. There were at least six people in the room, all sitting around silently, and waiting for the doctor to talk to us. He explained all of the problems that extremely premature babies have and talked about the brain bleed that Caden had. We were told that his brain bleed had now progressed to a level 4 bleed, the worst possible. We knew this was the worst-case scenario as we had already had a meeting about the chance of survival with anything more than a level 2 bleed. We both broke down, unable to speak. They were waiting for direction from us on what to do. They talked about our 'No superhero measures' for life support and what we wanted to do. We both couldn't get the words out. We knew what needed to be done as he would be brain dead, with unknown severe disabilities and complications if we continued life support. He also had a staph infection in his lungs, spleen and kidneys as well as his lung problems. He had fought so extremely hard, and we had to make to the most difficult decision of our lives to stop all extra life assistance.
They left us for a few minutes and told us to take our time. We decided we would come back later that night to hold Caden as he was taken off life support. I was then discharged, and finally, after 7-days, I was able to go home and see my 1-year-old.
At around 5 pm on the 13th of May, we returned to The Mercy NICU ward to meet with the doctor again. We followed all of the nurses and doctors into a spare room, and we were given permission from the hospital for our first son to meet Caden. He crawled around the room, blissfully unaware what was happening and then he was taken home. It was the first time we were allowed to hold Caden. Heartfelt came once again to get end of life photos. This was not pleasant, but I am glad we have them now. It was then time at around 6 pm for Caden's breathing tube to be taken out. He had morphine to keep him comfortable, and we held him until it was his time to go. He was a tough little thing the whole way through and continued in these moments. The nurse gave us some privacy, and we held him as they came every 15 minutes to check his heartbeat.
At 7:58 pm on the 13th of May, Caden Hunter Boyle lost his fight and passed away in our arms. We left the hospital with a memory box made by the nurses full of all of his things. He was a fighter from the very beginning until his the very last moment.