Oliver's story- my little Heart Baby. (Long.)

[MyFourCubs]

I can't write about my son's birth without writing about the lead up to it- many of you know his story, many of you shared in the devastation that we went through, the pain, the shock, the fear- so I apologize if this is just a rehash of it all. I need you to all know however just how much your support helped me through it- I found so many amazing people on this forum, most of you that I didn't know who still cried with me and prayed for me and my baby. For this I will forever be indepted.

This is Oliver's story- warning, it will be long and I will post it in parts- it is still not finished but I want to start posting before I lose it.

ETA to add: Ok, it is really, really, really long- sorry. Perhaps more like novella? Grab a cuppa if you really want to read it


I fell pregnant in April- unplanned, story of all my children really. Although this one I blame square on my husband! I wasn't shocked- I knew from the moment it happened that a pregnancy would result- but I was scared, overwhelmed, anxious. All of the usual emotions, I guess. This would be number 4 for us- my previous pregnancies and births were complicated. Number 3 was a complete placenta praevia resulting in IUGR- the placenta packed it in at about 30 weeks and she was delivered tiny but strong at 36 weeks gestation- but we came very close to losing her and my ob had spelled it out in no uncertain terms that I was not to fall pregnant again. Heck, it was NEVER something I ever wanted to go through again.

I kept the pregnancy a secret from almost everybody as I struggled to process and find peace with it. However, like pregnancy number 3 I started bleeding early- bright red blood that signified that all was not well and each time I saw it I waited for what seemed inevitable, a miscarriage to result. The bleeding was constant, sometimes heavy enough to require a pad. I felt stuck in limbo- waiting for this baby to die. At about 8 weeks I decided to get an ultrasound to see what the hell was going on. It showed a strong heart beat and no clear reason for the bleeding- pregnancy number 3 all over again. I was so relieved that there was a heart beat but terrified- I was certain this was going to be another praevia, another IUGR- what if this time the baby didn't survive??

I persevered until 12 weeks, still in denial that this pregnancy would result in a baby. I refused to go to the Dr, I refused to call my obstetrician. I hadn't organised the 12 weeks scan, I hadn't booked into the hospital. I finally rang the Early pregnancy clinic at the local hospital who had organised my 8 weeks scan and asked for a referral for the 12 weeks one- not that I cared about down syndrome or abnormalities, I just wanted further proof that this baby was still alive as the bleeding, although infrequent, had no completely subsided.

So my husband, my youngest daughter and I all went to the scan- yes, the baby was alive and he / she was PERFECT. Heart beat was strong and the 3D shots showed that all the little limbs were forming perfectly. I left with a sense of relief although something still made me want to hold back from telling people. All along I had told myself that I would tell family and friends after we reached this "safe" point- (well, relatively safe as far as my pregnancies were concerned,) but I couldn’t shake the unwavering fear that this was not going to go to plan.

Fast forward to the 18 weeks scan- the day when our lives turned upside down. Again, my youngest dd, my husband and I attended the scan together. Originally the scan had been booked for the following week but my dh had been scheduled to go to Perth so I rang, pleaded my case and managed to get the scan moved forward a week so that he could attend. I was anxious- really anxious. I had been incredibly sick the previous week with some mystery bug- low temps, stomach pain, diarrhea. (Sorry for the tmi.) I was so worried that I had presented at our local ED just to check bubs was ok and after a 5 hour wait a portable ultrasound had been performed showing a happy healthy bub- much to my relief. It was odd though that only 5 days later I was literally sick with nerves about this next scan. I guess sometimes you know when something is not right- a mothers instinct, as the sonographer later said.

I was lying on the table, mildly shaking with nerves when the scan was begun- there was our baby kicking around, sucking his little thumb, waving his hands in front of his little face. I began to relax, pointing out the little limbs to our dd. The sonographer was looking at his brain and I asked if everything was ok as she seemed too quiet- she answered yes, as far as she could see- but she also asked, "why? Are you worried about something?", and the way she said it put me a tad uneasy. I replied that the beauty and downfall of the Internet these days is that you are aware of all the things that could be wrong. At that point I felt a little kick and I told her so- she looked...... hesitant is the only way that I can describe it and asked, "did you?" while not looking at me at all. Looking back on all of this I really should have picked up a lot sooner that there was something very wrong but at the same time, looking at an obviously happy, moving baby it seemed so unlikely . While she was scanning quietly I asked to know the sex- to be honest, (and this seemed unbelievable so many months down the track,) I was really worried that it was a boy. Our DS1 has autism and I knew the risks of having another boy in particular with autism was quite high. However, as she went to answer I said, "hang on, firstly- is the baby healthy? Is everything else ok?" She hesitated. Finally she replied, "to be honest, I don't know. I can't get a good look at this baby's heart." She was angling the probe all different ways to try and see what she was obviously deeming to be unusual. I lay frozen, finally sensing that there was something that she wasn't telling me- waiting and hoping that she would tell us that all was fine. Eventually she said, "Can you see how the heart is kind of... fluttering? It's not really... beating?" Ok. At that moment, my world stopped. She saw my face and my reaction and quickly apologised for scaring me. She said, "I am so sorry I just thought you should know what is going on." She then told me to get up and go for a walk in the hope that when I returned bub may be laying at a better angle and she could get a better look at his heart. Somehow I managed to get up, walk out of the room, past the front desk without looking at anybody- to the toilet. I went to the loo in slow motion, somehow without really breathing, came back and climbed slowly back onto the bed. I had my eyes closed- I couldn't look at this little person again- my eyes stayed that way through most of the scans to come. I remember trying to breathe- trying to stay calm- I recall asking my dh to ring pre-school to see if they could take DD. I member telling him not to leave me- he was scheduled to go to work straight after the scan and actually had somebody waiting to pick him up as they had his car. I tried hard not to panic but I felt like the world had stopped.

Eventually the sonographer said, "I am so sorry I am going to have to go and get the dr to have a look at these and see what he wants to do." She tried to explain to me that bub heart rate was far too high- but I couldn't hear it. I didn't want to see where she was pointing, I just didn't want to know.

My dh took our DD to pre-school while I was sat in a little room with nothing to do but wait. That half hour or so is blurry to be honest, I remember somebody bringing me a drink and me trying to take it. The sonographer came back with a sealed manilla envelope and said, "The dr can't find anything intrinsically....wrong, with the heart- but it is going very, very fast. He has rung Gosford Hospital and they are waiting for you, they will know more than we do about what to do next."

[MyFourCubs]

My dh had called my best friend who had driven up as fast as she could to take me to the hospital- it was like an old movie in that everything was moving in slow motion. Dh still wasn't back from pre-school so I met her out the front and tried desperately to mantain normal converstaion. I could tell that she had beern crying too.

We got up to the hospital, they had told us to go straight to delivery suite and a Dr would meet us there. As it happened I was supposed to be meeting with the head OB for my first antenatal appointment after the scan- I had had a bad experience with another DR at the hospital with my previous births and I refused again to see anybody except the head Dr that I was booked in to see. The 3 of us at this stage, My Dh, best friend and I, sat in one of the little birthing suites at a table and chairs. I was trying so hard not to look at the little plastic cot by the bed that I was becoming certain my baby would never get to use. Eventually the DR arrived with another, a woman called Fiona, by his side. He had looked at the notes and was clearly aiming for calm and professional although I found his manner a bit cold and removed given the situation we were facing. He confirmed that bubs heart rate was too quick- I had been careful not to ask the exact heart rate and I told him straight that I didn't want to know. I recall him hesitating, as though he was trying to formulate the right words; he said, "The normal heart rate is 110-160. It's going.... a little faster than that." He than proceeded to tell us that because the heart was beating too rapidly fluid had begun to form around the heart. At that point, I fell to the floor- it felt like the walls were caving in. He spoke about how it could have been caused by a viral illness and all I could think of was the illness I had last week. To be honest this just made it worse as I was thinking, "this time last week I had a healthy baby, I still would have if I had not gotten sick." He said that if it were caused by a virus than there was nothing that we could do but wait and see if it resolved. I couldn't speak, I could barely listen. I heard my best friend ask if in most of these cases was there a positive outcome?" My eyes were closed at this point but I read his silence. He eventually answered, "No. In most cases there isn't." I just wanted to die. I rememebr rasing my head to try and look at the drs and I asked, ïf this baby dies, when is it going to die? How are we going to get it out?" We were already planning a c-section due to my history of PPH and previous c-section. The thought of having this surgery to deliver a dead baby was more than I could bear. He told me that if the baby was going to die we would know sooner rather than later and we would deal with things then. In other words, evaded my question the best that he could.

He told me that Gosford Hospital was not really "equipped" or experienced enough to deal with our situation and I would need to be referred to Royal North Shore Hospital in Sydney. He said he would ring them and hopefully they would be able to see me sometimes this week. Ummmmm......hello? Are you serious? I can't rememebr what I did or said but I know that I must have lost it. The female Dr, Fiona said, "You know what? I know the head of the Maternal / fetal unit there- I am going to give her a ring and see if I can call in a favour." Oh, bless that woman. To date she is still my Hero. Somehow she managed to get an appointment for me at 2:30pm that afternoon- about 2hours away. We went home first to put some things in a bag- toiletries etc, in case they wanted to keep me in. I would learn later that at 18 weeks gestation norbody would give me a bed as bub was not considered "viable." If it died, it died.

The trip down to RNS was just surreal. I was in the fetal position for much of it. I remember my DH going through drive thru at Macca's and he bought me a lemonade and a box of cookies but eating was a bit of an ask at that point. When we got to the hospital I was seen almost immediately. They began the scan and I lay with my eyes shut, my hands over my face. The sonographer was lovely, I actually felt very sorry for him- I can't think of many worse things to do than scan a woman whose baby is dying. He again tried to show me the heart and the fluid- he told me that the fluid was also collecting in the abdomen, (ascites) and he was trying to determine if the fluid was around the lungs as well as the heart. (Pleurel effusion.) I told him politley that I would prefer not to know and he squeezed my hand and told me that was fine. I made the mistake of opening my eyes once- in time for me to see him type "242 beats p/min." OMG I nearly died. I remember saying, "I didn't think it was possible for hearts to beat that fast and he tried to play it down, replying: "yeah, we do get some fast ones in here."

After the scan we were placed in another little room to wait for the DR. I was curled up on the little couch with my head in DH's lap. I didn't want to hear what she had to say. I wanted to die. By that point i had completely shut down. How could we have gone from watching this beautiful little person sucking it's thumb and playing with it's feet- looking at our baby- to this? It was unbearable.

The Dr when she came was lovely but I could tell she didn't want to give us any false hope. She asked how much we understood of what was happening and I couldn't speak- I think DH spoke for us. She told us that the baby was in SVT- super ventricular tachycardia and this was causing the hydrops- the fluid around the heart and in the stomach. She said they had no way of knowing at this point what was causing it but agreed that a virus was a likely cause and as such I would be tested for the obvious ones like CMV, glandular fever and infections such as listeria and toxoplasmosis. I was to be put on a drug "Sotolol" in the hope that this would bring the heart rate down. If there was nothing else going on and the SVT was isolated as the problem- the drug should work. If not, than there wasn't anything else that they could do. I was to have all the blood tests and come back to see them in a week. I asked her, "Will this baby still be alive in a week?"and she gave me a small shrug and a sympathetic smile. "We don't know," I think was her answer.

The next week was a blurr. I couldn't bring myself to function. If I could have I would have buried myself under the bedsheets and not come out at all. I didnt' want to see anybody, I didn''t want to speak to anyone. My friends rang but I couldn't bring myself to take their calls. To be honest I think I was a complete b!tch at that point, I just couldn't muster the energy to be nice to anybody. The only thing that I could summon the will to do was google- everything and anything I could find on Fetal SVT and hydrops. Of coarse I was hoping to find somehting that gave us a bit of hope and instead I found the complete opposite. Fetal SVT, particularly when seen with hydrops, had a mortality rate of between 90-100%. The hydrops were an indication of cardiac failure as the heart was pumping too quickly but not effectively. The earlier the SVT was diagnosed the worse the prognosis. At 18 weeks when viable delivery is not an option was about as bad as it gets. My baby, it seemed had zero hope. It was going to die and the grief and the devestation was utterly overwhelming. To make things worse the kicks were becoming more frequent and stronger- rather than taking this as a positive sign I saw it as a kick in the guts- I didnt' want to bond with this baby that I was surely about to lose. I tried to convince myself that the less I acknowleged this baby- the less I knew about him / her, (I no longer wanted to know the sex, it would have made it too "real",) than perhaps losing it would be more bearable. I suppose I wanted to believe that If I ignored the baby enough I could pretend that it had never existed, that the grief would be lessened somewhat. I recall asking my DH how on earth I was supposed to walk around and and be visibly pregnant with a baby who wasn't going to live? How was I supposed to do that?

By the following week I was absolutley 100% convinced that I would not be returning home from the hospital appointment. I was certain that the baby would be dead or at the very least so sick that delivery was the only option. I was functioning on autopilot- I did the grocery shopping, made sure the fridge and freezer were full so that Dh and the kids would ahve food and meals until I came back. I had to explain to my eldest dd that the baby was, "sick" and we didn't know if he or she would get better. I tried to prepare everybody for what was about to unfold.

The day of the scan I was almost numb. I caught the train down alone to RNSH and met DH there as he was working in the city. The whole way down i tried to remember to breathe. The baby was moving so I knew it was still alive and I tried to talk to him quietly, willing him to slow down- hoping that if I could stay calm then he would too. All week I had been obsessively feeling my stomach, trying to determine if it had gotten bigger or smaller- trying to determine if the fluid levels had changed. When we got to the hospital I could barely stand let alone breathe. I got up on the table shaking like a leaf, my eyes closed. The sonographer said immediatley, "well, the heart is slower than last week....." unfortunaely I opened my eyes to see what I can only describe as the heart moving like a jellyfish, it was moving that slowly. I said to her, isn't it moving too slow??" She didn't answer but I saw her type in 82beats per/min. Oh dear God. My stomach knotted and I felt like my own heart was about to collapse. I started to hyperventilate and shake, this was the nightmare that I had been envisioning. She was whispering quietly to the student sonographer that she had with her. She briefly turned up the volume to listen to the heart and I don't think I will ever get over that sound it was going, 'boomp....boomp............boomp.............." It was so slow and irregular that it made my blood cold. I was crying by that point and she turned the volume off. I said to her, ït's dying isn't it, it's about to die." She was quite calm and said, "some babies do very well at 80beats per/min." Unfortunaely one of the many, many stories I had come across on google was where the baby fell from 240 beats per min down to 80 and then died and I was convinced beyond doubt that this was what was happening now so her attempts to calm me were not at all effective.

I don't know how, but I managed to climb off that table, into that little room and wait for the Dr to come again. This time she was joined by a lovely Man, "Professor Morris." I again had basically shut down. I didn't want to hear anything either of them have to say . I do remember although my eyes were closed that he was relatively calm and upbeat. he told us that it appeared that the Sotolol had worked "too well," and the baby did not appear at this point to need it. He wanted me to stop it and return in two days to see what happened. I was quite stunned to be honest as I thought at that point it was pretty well cut and dried. I remembwr looking at him and asking if the baby was dying. It's quite comical looking back on it, his answer- He stroked his chin as though he was considering something intriguing and replied, "No... I don't think it is...... at the moment." He said that the placenta and fluid looked good and the baby was active. He just wanted to take me off the medicine, see me in two days and possibly the heart may settle at a normal level. He went on to discuss the various reasons why this could be happening but the blood tests that had been done the week previous still were not back so until then we were no closer to getting an answer and all we had for the next few days was Hope.

Hope at that point was a really dangerous thing because I feared I was just setting us up for failure and at my lowest point already I didn't think I had the strength to endure it. It did enable me to get through the next two days which were particularly hard as I had to go to my daughters school for education day. I wore my baggiest clothes as I could not handle anybody asking about the pregnancy- I wouldn't have been able to answer without crying. I managed to get through the day, feeling reasonably inconspicuous and luckily nobody appeared to notice my belly. I did learn many weeks down the track from my daughter that everybody DID notice that I was pregnant but thankfully nobody was game enough to comment!

[MyFourCubs]

Two days later I travelled down on the train again to RNSH. Once again, I was a mess. The stomach cramps, the nausea and the palpitations never got any less whenever I had to go for these visits- even several months later. It was excruciating.

Again, I met my husband and again, we followed the familiar routine- beginning with the scan. Immediately it was evident (even with my eyes closed,) that the heart beat had changed again- unfortuanetly back up to 238. To be perfectly honest, irrationally because I knew the SVT was causing the hydrops, (the cardiac failure,) I was actually relieved that the heart rate was so high as this scared me mildly less than the brachycardia- the 80 beats per /min. At least the baby was alive. At that point we were to find out however that the fluid was in fact pleurrel, not just pericardial effusion- it was now surrounding our baby's lungs as well as his heart. I think this was the absolute lowest point from memory as it seemed like the final nail in the coffin. When we met with Sarah, the Dr, she was also non-enthusiastic. The results of my extensive blood tests had come back showing absolutley nothing- in other words, we were no closer to finding a reason for the SVT and our baby was no better. The only positive result from my bloods were for toxoplasmosis- I was certain however that my prenatal screenings had said that I was immune and upon conusltation with the resident immunologist all the positive result indicated was that I ahd been exposed to the bacteria at some point- not that I had a current infection. We were basically at a dead end.

It was at this point that Sarah suggested an amniocentesis. She thought it was our last shot at finding a cause for the SVT. The idea scared the hell out of me. I knew the risks of miscarriage were low but regardless, it was a risk I was not at all inclined to take. When I said this to Sarah her reply was- not in so many words and I am certain that I am paraphrasing- that at this point the baby was likely to die anyway so we really had nothing to lose. We were sent for a walk, "to think about it,"which basically involved me sobbing for an hour because I was so upset at the thought of the amnio. Yes, I knew the baby was likely going to die- yet If and when it did, I didn't want it to be as a result of something that I had done. This little person I would fiercly protect with my life and I could never, ever forgive myself if he died because I made the wrong decision.

When we got back to the hospital Sarah had been called away but we met with Professor Morris. I asked him if the amnio could give us anything that we could actually treat- or if it would simply be a case of "knowing" that there was a problem but not being able to do anything about it. He said it was the latter. The amnio could tell us if the baby had Down Syndrome for instance or if it had been infected with toxoplasmosis, but then it would be purely for the sake of us having the option to terminate the pregnancy or continue knowing the issues that were forecast. Well, in my mind then there was no point. I told Professor Morris that in no uncertain terms would I consider terminating the pregnancy unless this baby was absolutley 100% going to die and even then I don't know that I could bring myself to do it. At that point I was 20 weeks pregnant. I could feel the baby moving around, I had seen him or her on ultrasound. This was as much my child as my other children were and in my mind this ment that he was as deserving of my love as they were. I coldl tell the Professor thought I was being a little naieve so I hastened to point out that we was no stranger to special needs. Our Ds1 has autism and in is a perfect example of a supposedly "normal" baby born from a perfectly, "normal" pregnancy. We don't always have the option of forecasting if a child will have special needs or not and once they are born you would do anything you can to lhelp them. This baby I was carrying was no different in my mind. Whatever came our way, we would deal with it.

Ultimately, we were told that it was absolutley our decision, and the Professor was quite happy to let us go without having the amnio. He wanted me to go back on the sotalol at half the dose and return again in a week to see if anything had changed. The prospect of another entire week, not knowing what was going on with this baby's heart was terrifying and I started to fall apart at the prospect. My strength was crumbling. The Professor said that while we were more than welcome to come back to RNSH at anytime to check on the baby it may be more convenient for me to go into Gosford Hospital for a simple heart rate check. While I agreed that this would be easier the thought of going back there was really non enticing. I was concerned that the midwives and Drs there would have no idea what to do with me, (and I was mostly right,) so the professor said that he would ring his colleague there and organise for me to drop in and see her when needed and she would be fully briefed on our situation. It was to my huge relief later when I discovered that his collegue was Fiona, the wonderful Dr that I had met that awful day of the ultrasound- Yay!!!!!

The ride home that day was a turmil of emotion. I was satisfied with my decision not to have the amnio and I was relieved that a plan had been put in place where I could go in to Gosford and check on the baby. However, there was nothing that indicated that our baby was likely to improve- he was in cardiac failure and his lungs were drowning in fluid. I wondered, again, for the thousandth time, if we were simply delaying the inevitable.

At home I continued to Google- anything and everything that could possibly be related to fetal SVT. I googled alternative remedies and of coarse there were none- I would find treatments for adult SVT but then would find that whatever it was would be contraindicated in pregnancy so I continually hit a brick wall. I tried mediatation, burning lavander oil, massaging my belly. It was such a conflict wanting to devote everything I had into saving this baby but at the same time terrified that the harder I tried, the further I would have to fall when the baby died.

The following night I rang Gosford Hospital and asked to come in- I had to know if the medication had brought the heart rate plummeting down again and my insides were knotted. The midwife I spoke to nearly took my head off, i assume they were busy and she couldn't understand why I wanted to come in for a heart beat check. I recall trying to answer, "because my baby has fetal SVT and has fluid around the heart and lungs and I'm on sotalol..."and breaking down in tears to the point where I could no longer speak. That at least made her a lot nicer to me, lol. She told me that I could come in around 7pm- about an hour away. I remember driving in, trying to calm myself and the baby by enhaling a tissue soaked in lavander oil. My heart was beating at around 200 beats per minute, I knew that much. When I got to delivery suite, Fiona wasn't there but the midwife had at least been briefed about me and had my file open. She was quite brisk, clearly just her manner, and took me into another of those horrid rooms and asked me to climb on to the bed. I really wish that they had at least one room without one of those plastic cots for women in similar situations. The entire pregnancy everytime I had to be in one of those rooms it was pure hell. She got out the old fashioned fetal doppler- nothing high tech in this place- and slathered my belly in jelly in order to find the heart beat. She picked it up almost instantly but it was horribly fast and she had difficulty timing it. I could tell she was taken back but she did her best to hide it. Not only was it fast but it wasn't regular and when I pointed this out she replied mildly, "yes- it is skipping." My stomach was completely in knots at this point and I was beginning to cry. I asked her how fast she thought it was and she replied, "about 200." I broke down at that point. I was just completely over it. It was a nightmare that I didn't think that I was ever going to wake up from. I asked her, irrationally what I had done wrong- I wasn't a smoker, I didn't drink, I didn't do drugs. I didn't even drink full strength coffee for crying out loud. I took my prenatal vitamins. I just couldn't understand how in hell this was happening to me! At that point she actually stopped and patted my knee and said, "that's exactly right. YOU haven't done anything wrong. This is not your fault." I asked her what else I could do to give this baby a better chance and she replied, "nothing. Sometimes these things just happen."

I returned the following night as I was quite frankly a complete wreck. I was so wrecked with grief and worry that I didn't have the capacity to function. Everything revolved around this baby and his heart. Until we had a result one way or another I couldn't see how I was going to live. The midwife I saw that night was completely out of her depth- she was the first of many who would tell me throughout the remainder of the pregnancy, "oh, we don't deal with anything like this here- if we pick up a problem like this we send you to Sydney." I believe she was also the one who actually asked me, "do you know what the survival rates are for this condition?"To which I replied through gritted teeth, "Yes- they are not good. Thanks." She too had difficulty calculating the heart rate as it was so quick but for me, it was the first time that it actually sounded anything close to "normal." It was still fast but I thought that at least it sounded regular. She called in another midwife to double check and they both agreed that it was about 180 beats per/min. Still in SVT- but conisdering it was 240 3 days earlier this had to be an improvement, didn't it? Unlike the midwife of the previous night neither of them were satisfied with sending me home without review from the Dr. I sat in that awful room for over 2 hours when finally the Dr arrived and it was Fiona- thank God. the one person I never had to explain anything to! She rang Sarah at RNSH who said that she was happy with the heart rate- even though it was high it was preferable to being too low, apparently. As much as this was a relief, I still cried my eyes out on Fiona's shoulder. I hadn't slept in weeks, I had barely eaten- I was a mess. I didn't know how much longer I could bear this. I will always rememeber Fiona looking at me with that symapthetic smile that I had grown accustomed to from Sarah and the other Drs at RNSH- the smile that said, I am so sorry, I know this is awful and I'm sorry I can't promise you that it will get better." It is only now in all honesty that I am fully aware that nobody ever expected my baby to live.

[MyFourCubs]

The following week was the turning point that I don't believe anybody expected and I had personally given up hoping for. I caught the train down to RNSH once again, a complete wreck of coarse, but this was becoming par for the coarse. Every single visit I would pack my toiletries, a change of clothes etc- in case that was the inevitable visit where I would not be returning home. We were met with Sarah almost immediately who asked if we minded if she observed the scan. That was a non-issue- I didn't care who watched it or performed it, it wasn't going to make the outcome any different. As usual I had my eyes tightly shut and I could hear Sarah and the sonographer conversing in hushed tones. I heard her laugh at one point and I thought this was extremely odd- what on earth could be funny? The sonographer said, "You can open your eyes, Sara." I replied, ""I will only my eyes when you find something really good to look at!" To which he replied, "Well, it's all looking pretty good at the moment!" I opened one eye- saw the heart betaing which by that point scared the cr@p out of me and shut it again. I asked him, "how high is it?" He replied, "It's not- it's a beautiful 151 beats per minute." My heart was in my throat. I opened my eyes, my heart thumping, I so didn't want to hope in that moment- I had given up hope. I asked him, "what about the fluid?" He squinted at the monitor. "Ummmmm...... ok, there is the tiniest bit of fluid next to the heart but it's well within normal limits. If you hadn't asked me to look at it I never would have thought to comment." OMG. This was......unbelievable. I couldn't believe this could be happening and I started to cry. "What about the fluid in the stomach?" I asked. He replied, "It's gone. There is nothing there." Sarah spoke up then as she passed me a tissue: "Sara, if we hadn't seen this baby on the previous scans we would honestly think we were looking at a perfectly normal baby. Everything looks fantastic!" It was at that point when I started to cry.

I can't describe the high that I was on when I climbed down from that table. The sonographer printed off two photos and handed them to me. Nobody had given me photos previously for obvious reasons, I had not received one since the 12 weeks scan. To look at this precious little baby kicking around without a care in the world was just incredible. At that moment I didn't care if the baby was a boy, or had autism or Down syndrome or any other syndrome for that matter- he was my baby and his heart was still beating and I was absolutley in love.

While we waited for Sarah in the other room my husband handed me the phone and said, "Call your Mum."I phoned her to tell her the news and she was crying too. When Sarah returned she told us that while we still needed to exercise caution- the Sotalol was working for now at the dose that I was taking but there was still the chance that the baby would relapse- things were looking, "a lot brighter than last week." I was to continue on the medication obviously and return in a week and if I wanted to I could still check in with Gosford for a heart rate check in the meantime. That was the first day that we all left with smiles on our faces.

The next few months would be a a constant up and down journey for me in that I would alternate frequently between optimism and complete conviction that everything was going to go bad again. I felt like a ticking time bomb. At that point I was counting down towards 24 weeks when bub would be viable- then I would subsequently decide that 28 weeks would be my "safe point," then everytime I reached such a point it would get pushed back a few weeks. In other words I never, ever felt "safe." The week or so after that appointment though were by far the brightest- it was the first time that I could actually wear maternity clothes and rejoice in, "looking pregnant." I WANTED people to see my belly- I was so unbelievably proud of this little person and his strength- he deserved to be shared with the world. It was unfortunate however, that once the intial high wore off I would revert back to fear and pessimism- I never really, truly believed that I would end up with a baby, I couldn't see how or why I would be that lucky.

To be continued.

[Daydream Believer]

Hi, I'm hanging out for the rest of your story. I was heartbroken for you. You've described everything so well that I felt right there with you. *hugs*
Thanks for sharing your story

[AllMyKids]

What an absolutely heartbreaking story. When i read the part about the heart rate being 151 the tears started. I am really looking forward to the rest of your amazing story xx

[violetdreams]

Oh goodness Sara, what a story so far, have shed a few tears over it, i couldn't imagine the rollercoaster ride you had been on.

[sandramm1]

Sara that is truly a remarkable story and you have such strength, not only for holding on through it all but for recounting it in such an amazing way. Cant wait to read more.

[MyFourCubs]

The following weeks visit at RNSH showed exactly the same- much to everybodies suprise and relief. I had hired a fetal doppler from bellybeats.com so that I could check the heart rate at home- I just couldn't deal with not knowing what was happening on the inside and I hated having to go into Gosford. I was then allowed a two week break between appointments and at the magic 24 week mark- when everything was going well- I was told that I could stay away for a month. A month!! While this was a huge relief it was also quite daunting- how much could go wrong in a month??

It was decided by the RNSH hospitals that I was "stable" enough to resume my antenatal appointments at Gosford Hospital. I hadn't actually had an antenatal appointment in over 10 weeks- no blood pressure checks, no urine screens. Wow, the things that you miss, lol. So with a lot of trepidation and some misgivings, (I really hadn't recovered from that horrible day I had to see their Drs after the fateful ultraosund,) I finally rang and booked myself in with their antenatal team and they could see me the following week.

It was the most bizarre feeling sitting amongst so many, "normal," pregnant women at the clinic. I felt so far from normal at that point and it would appear that the Drs were thinking the same thing. I had been sitting for well over and hour, watching other women be called in and waiting to hear my name. After a while I began to watch two Drs having hushed conversation in the hallway over what appeared to be a patients file. They conversed, while reading each page together for over 10 miniutes before, to my suprise, they came out and called my name. After I was seated in the little examination room the male Dr said to me, "I am so sorry that we have kept you waiting for so long. I started reading your file and to be perfectly honest, I could not understand 1) How on earth you were still pregnant and 2) If you were, what on earth you were doing here with us." He shook his head and smiled, "I was amazed when I got to the most recent photos of your baby and saw what a turnaround he has had. Quite a miracle."

That Dr turned out to be a really lovely man who at one point, upon hearing about the negative experiences that I'd had with another Dr with my previous births, agreed that he would take me in his care for as long as I was able to stay at Gosford and should I need to birth at RNSH he would agree to travel down there in order to perform my ceaserean. At that appointment however, he was reluctant to discuss the birth in as it was clear that he still had a tremendous amount of reservations as to how the pregnancy itself was going to go. He agreed that after I saw RNSH at 28 weeks, all going well we would discuss the future in more detail.

28 weeks came and went with bub doing well. I was at that point attending Gosford Hosiptal fortnightly and my appointments with RNSH would be monthly until 36 weeks when I could be discharged to Gosford entirely if the baby was ok. I, of coarse never thought for a moment that we would get that far. Sarah Buchanan, my DR at RNSH was planning to try and "wean" bub and I off the Sotalol at 32 weeks so up until then I was convinced entirely that baby would revert straight back to SVT, upon which I assumed they would simply deliver. As it turned out, my fears were not completely unfounded because at my 32 weeks visit Sarah said that she feared exactly the same. In her view, bub was doing so well- growth was excellent, heart rate and fluid were good- why rock the boat when in doing so would most likely pre-empt an early delivery when presently, we were on track for a full term birth. While this came as enormous relief to me, the downside was that for the rest of the pregnancy I still would have no idea if the baby would be ok without the medication. For months now my life had revolved completely around the Sotalol- I had to take it exactly 12 hrs apart- at least 2 hrs after food and 1 hr before. Anybody who has been pregnant knows that going without food for 3hrs is generally a bit of an ask! It was always incredulous and somewhat frightening to me that these tiny little tablet halves were what was keeping my baby alive and so the fear of stopping the medication, along with the fear of not stopping- and not knowing- were always consistent.

As we crept downwards towards 39 weeks when bub would be delivered, the anxiety and fears began to mount. While we had managed to come so far from that horrible scan at 18 weeks- nobody could predict just how this baby was going to be until the delivery. I of coarse began to google again. While the Drs were becoming increasingly hopeful, everything that I read brought upon a catalyst of fear. Babies delievered in SVT still only had a 50% chance of survival, when born at a mean gestation of 39 weeks. The SVT could be caused or associated with other cardiac conditions and / or congenital heart defects. The fear of what they would see when this baby came out began to consume me.

The last 4 weeks were the worst for me- not counting of coarse those few weeks immedicately after the diagnosis. That is when I began to lose it. I guess it was summarised at one of my last antenatal appointments where I broke down in a flood of tears in the waiting room and the receptionist, DR and midwife all came came to see what on earth was the matter. I replied, "This has been a very long... very difficult... very emotional pregnancy. I have kept this baby alive for almost 9 months and I cannot have it all go wrong now. I just can't. It will kill me." Wheras at 18 weeks if my baby had perished that would have been utterly devestating- to have come this far, to have bonded with this baby, to love this baby so much- to have him die would be unbearable. Absolutely and utterly unbearable. I know that babies die. I know that people survive it. I don't know how on earth you get through it.

Amazingly, from a physical point of view, other than the minor heart problem there were absolutley no other problems with the pregnancy. Wheras in my previous pregnancy the placenta had failed at 32 weeks- this time the placenta held strong, the amniotic fluid levels were consistently good. As the sonographer said at one point, "compared to your last baby, this one has a swimming pool!" I, aside from the usual aches and pains and tiredness of late pregnancy, was coping ok. Everything seemed to be in our favour.

Emotionally though, the pregnancy was a very lonely one. It wasn't lonely in terms of a lack of friends or a lack of support because I had both- in abundance. It was lonely in that I could not get excited or hopeful about the pregnancy. I couldn't join in with everybody else as they bought cots and prams and decorated the nursery. I couldn't talk about, "when the baby came," or plan in anyway after the delivery. Up until the week before I went to hospital for my ceaserean I had nothing, but for a few clothes and bits and pieces that my wonderful friends had given- although all were away, out of sight. It is a very strange feeling to be having a baby so soon but to have nothing at all to indicate as such. We had no cot, no change table. No nursery. In the week prior I succumbed to buying a few things on ebay- a nappy bag, a pram. However, I orgnaised it so that they would be delivered while I was in hospital- therefor if things went badly, my husband could dispose of them before I had to come home. By that point, I was utterly convinced that the baby was going to have a cardiac arrest and die at birth. I cannot begin to express just how certain on that point I was. I managed to pack a little bag for the baby with a few suits and a tiny packet of nappies- but really, I believed that I were simply going through the motions. I never washed anything, they still had tags. I truly never believed that my baby would get to wear them.

Continued Page 3

[Hokey Pokey]

I am just speechless