~Our Story~
I found out I was pregnant on Thursday the 10th of October 2002. I did the pregnancy test in the toilet at Greensborough Shopping Centre in Melbourne. We were just about to put a deposit on a family holiday to Tahiti & I said to Steven, I just have to make sure I’m not pregnant. I can still remember running out of the toilets up to Steven & Anna-Jayne who were looking at puppies at the pet store to tell them we weren’t going on holidays!! We rang everyone that night because we were just so excited and if anything was going to go wrong, we would still want people to know. We got a lot of “what, again, already??” as Anna-Jayne was only 10 months old but we wanted our babies close in age!
After a few weeks, I told Steven that I wanted to have the Nuchal Fold Translucency Scan as I felt something was wrong with the baby. They didn’t offer it as standard in Melbourne but we chose to do it anyway – I am so glad now! I can remember speaking to the Midwife the day before the scan while I had my blood taken for the triple test and telling her that I felt something was wrong. She told me that almost every Mum she saw said that and only 2 women had ever been right – she actually rang me the afternoon after my scan and said – now it was 3 and how sorry she was that I was right!
My Mum, Step-Dad, Anna-Jayne & I were driving to Adelaide for my Aunty’s 60th Birthday the day of my scan – December 6. We all went as we were going to leave from the Ultrasound Clinic. Dad & AJ stayed in the car and Mum came in with me. Steven was out field for the weekend & I thought it would be nice for my Mum to come as she was there when AJ was born but she had missed AJ’s ultrasounds.
The sonographer did a thorough check on all the organs and then said she had trouble seeing all of the heart and just wanted her boss to check it out. We were moved to a room with a more in-depth scanner and I just knew then & there. I was okay while Dr Hurley was looking and looking but when he asked me if I wanted to know the sex to which I said yes and he said “he’s a boy” I just had tears running down my face. I had got my much wanted son and now he was sick. We were put in a “Quiet Room” and Dr Hurley came in and told us that the baby had Hypoplastic Left Heart Syndrome and that the outlook for him was very grim. He told me that he didn’t want to go into too much detail, he wanted a cardiologist to confirm the diagnosis and meet with Steven & I. I had no idea what HLHS was & asked if the baby was going to die before birth to which he said no but very likely that it would be very soon after and if he did survive his quality of life would be very poor. I asked if he was suggesting termination to which he replied that he was a father himself and that if his daughter was in the same situation, he would advocate a termination. I was young, obviously fertile (I already had a beautiful belly) and we could have healthy children – Anna-Jayne was an example: Basically, better luck next time. He was the most lovely man, although he was telling me news he must tell parents every day, he was obviously grieved to tell us. I don’t blame him for thinking termination was the best option, he was being honest & I still appreciate it to this day.
We had another scan at the Mercy Women’s Hospital on the 17th of December at 14 ½ weeks. We saw Dr Fong, a neonatal cardiologist at the Royal Children’s. He confirmed the diagnosis of HLHS and also advocated termination. Steven & I were still very confused as we felt we hadn’t been given all the details with which to make the most monumental decision of our lives. But, we still booked into see Allison Thornton at the Royal Women's the next day to discuss/book the termination. She threw an entirely different slant on the situation. Yes, we were up against some huge odds but we still had a 50/50 chance of survival. We were gob smacked – Dr Fong had refused to talk in terms of percentages – he would only say the outlook was very grim & the babies that did survive often had problems relating to the surgeries.
Alison wanted us to have another scan with a sonographer at the Women’s just to triple check & buy us some time to think. We could also have amnio then if we chose to continue. I had a flame of hope in my heart that I had not felt since the 6th. I have to say though, right here and now, I knew deep down in my heart that Darcy wasn’t going to live, but I wanted to give him every chance we could. My darling husband Steven was so worried, I think he wanted to protect me from the heartbreak of going to the end of the pregnancy, giving birth to a beautiful boy and still losing him. He took a while to understand that he was already a beautiful little boy & whether we lost him now, when we knew 100% chance that he wasn’t going to make it or lose him in June when he had only a 50% chance of making it, wasn’t going to make it any easier. He stood by “my” decision the whole way and I will forever be grateful to him for opening his heart fully to Darcy. This makes him out to sound so heartless & cruel, but it is just the opposite. He was just so afraid. The reason why I am putting this down is I think a lot of Dads have this problem when faced with the same situation & we want you to know that we felt it too!
In the 5 days until our next scan, Steven & I spent hours on the Internet, gaining as much information about HLHS as we could. In the beginning we could only find UK & American info which we didn’t know how relevant it was to us. But we eventually found hearts of hope. What a godsend. It gave us the strength to fight for our son and know that there was HOPE. We were so worried that we weren’t going to be able to cope with an 18 month old & a sick bub. I read the Ovaris’ story and my mind was made up. If that fabulous family were willing to move heaven, earth and their whole family to Melbourne, then we could do it too. Steven read the story and agreed. We were holding onto this lil’ bugger as long as we could! When the decision was finally made, it was like a weight lifted from our shoulders and the sun started to shine again. A lot of well meaning family had told us that termination was “for the best” so we were a bit worried about telling them our decision. But you know what? Not one of them said we were doing the wrong thing. They all stood behind us 100% and said they would do every thing they could. We were on prayer chains all across the world!
So our pregnancy then became quite “normal”: Just the usual checks. I went into pre-term labor at 29 weeks, two weeks before we were being posted to Brisbane. Steven is in the Army & we got posted to Brisbane so that Darcy could have his surgeries. There wasn’t a place in Melbourne for him and we decided that Brisbane was a better choice for us. I got in touch with Jacqui who was expecting Georgia Kate at the same time and we spoke a lot. Our families have met through HLHS and have become so close. We were first united by this defect, then through our grief and now we have moved onto a whole new relationship. They are so special to us.
Anyway, we got through the pre-term labor and moved on up to Brisbane. I am sort of skimming over all this because it wasn’t HLHS related. My pregnancy was uneventful apart from the pre-term labor. The stress was immense, not knowing what was going to happen. The innocence I had when pregnant with Anna-Jayne has disappeared completely. When we have our next baby (hopefully!), I will be very aware that not all babies are born healthy and in fact, a perfectly healthy baby is a true miracle!
I had met up with Dr Carol Portman at the Women’s Hospital in Brisbane and she had decided that Darcy would be induced on the 2nd of June at 38 weeks. Then we would all know when he was going to arrive and we would be prepared, both at the Women’s and at the Prince Charles, where he would be operated on.
THE BIRTH
We got to the hospital at 7:30am, Monday, the 2nd of June, and went straight to the labor ward. The first (and only) lot of gel was applied at 10:30. I had a burning sensation after the gel was applied and started having “niggles” straight away. I was monitored for ½ an hour after then sent back to my room to relax (!). I was given my own room which was lovely. By 12 o’clock I was getting some nice strong contractions so I had a warm shower while Steven watched Jerry Springer. When I finally got out, he was watching Jaws. How appropriate! They took me back down to the labor ward at 3:30 to see how I was going and apply the next lot of gel if I needed it. They found I was 2 1/2cms dilated and decided to break my water. I just cried and cried. The midwife was telling me off, saying that it doesn’t hurt – she didn’t understand that I was now facing the “reality” of this birth. I couldn’t protect Darcy any longer, he was going to be born & fight for his life, whether I liked it or not! I had to be constantly strapped to the bed and monitored which was very hard. I wanted to be able to use some techniques that I had used in AJ’s birth but couldn’t do anything other than lie there. Although our midwife was lovely, I don’t think she fully understood Darcy’s heart problem and what I was going through emotionally. I wanted someone to coach me through this and help my breathing, give me other ways of coping with the pain, but she just left us on our own for the majority of the time – Steven & I were just so scared of what was going to happen once he was born, we couldn’t deal with the labor itself in a positive way.
Anyway, at 8:30 I decided that I had had enough and wanted an epidural. I was only 4 1/2cms. To be honest, I think I was holding my body back – I didn’t want to let him into the big, wide world! After 5 or so attempts, the anesthetist finally got the epidural in and I was reasonably pain free. The midwife never topped it up, I only had the one dose the anesthetist put in, so in hindsight I didn’t really need it! The midwife gave me a syntocinon (sp?) drip to speed me along and by 10 to 10 I was feeling the urge to push. At first the midwife didn’t believe me & by the time she agreed to look (just to humor me), his head was right there! The registrar, a pediatrician and doctor came in with the rhesus trolley and out he came – screaming and pink! It was a bittersweet moment, all I wanted to do was hold him in my arms and tell him how much I loved him but he was brought over all wrapped up for a 5 second look and then whizzed off to ICU while I delivered the placenta. Steven followed him to ICU & Mum stayed with me. The paed said he was lovely and pink – a very handsome boy; 6lb 3oz and 49.8cms long, born at 10:10pm. I didn’t have any tears or grazes and felt great.
They took me back to my room while Steven drove Mum home & I just lay in bed thinking “wow, I am sitting here, a Mum again!” Steven got back at about 1o’clock and we went down for my first real meeting. Dr Justo was giving him a fetal echo & we just watched our little man in rapt amazement as do all new parents. He was PERFECT (well, almost!) – a sprinkling of reddish hair, huge blue eyes and the biggest hands and feet I have ever seen on a newborn. Dr Justo confirmed that Darcy had HLHS and an aorta of about 1.8mm which was the smallest he’d seen. He was very concerned & said he would be a tough one but agreed he was so cute! At that moment in time, we didn’t care – he was here safe & sound for the moment and we were going to enjoy our miracle – even just for one night.
Darcy went along fine. He was transferred up to the Prince Charles on the Wednesday morning and as soon as I was booked out, we went straight up there too. I found it so hard to lie there at night, alone in my room and listen to all the babies cry & happy but tired Mums pushing their bundles down the ward in the plastic cribs. My arms ached for Darcy, and still do to this day. I don’t think that will ever go away!
As soon as we walked into the Children’s Ward at the Prince Charles, we knew something was wrong. Dr Whight (who we’d never met) was doing an echo on Darcy, with tears in his eyes and a lot of the nurses looked at us hesitantly, also in tears. I broke down there and then. Georgia had been operated on the day before and although I had spoken to Jacqui earlier in the day, I had not heard back. I just assumed they were at the PCH. But as soon as I walked in I knew. Georgia hadn’t made it. I cried, and sobbed & felt like my heart was breaking in two. NOT GEORGIA…… I had never expected Darcy to make it but took comfort in the fact that I would have Georgia Kate to see get through with flying colours & grow into a beautiful girl. It doesn’t seem rational when it is written out like this but it is honestly how I felt. Lyndall came straight over to me & said Jacqui wants you to call her. I will never forget our phone conversation “ Hey darling, what’s happening??” to which Jacqui replied “She died Leah, Georgia died”. My world was falling down around me – this wasn’t happening, this wasn’t meant to happen like this.
Within 10 minutes of speaking to Jacqui, Dr Whight told us that they wanted to operate on Darcy the next day, not next Tuesday as originally planned. The hole between the two atriums was closing and rather than put Darcy through another operation, they wanted to do the whole lot at once. We agreed that we wanted Darcy to go through as little as possible. Looking back now, maybe we should have done the other surgery first – he might not have made it though that one either but maybe it would have bought us more time?? But you know what? You can beat yourself up as much as you like after the fact, but we believe everything happened as it was meant to. We had Darcy baptized that afternoon by Father Gerard McMorrow – a true angel on Earth. He made Darcy’s baptism so special and we were so pleased when he agreed to do his funeral too. He had actually met Darcy and knew him, and we think, loved him too. Darcy was surrounded by his Mum, Dad, big sister Anna-Jayne, Nana, Poppa and special “Nana” Lyndall. Father Gerard ensured that Darcy would have his special wings lined up for him the next night!
The next morning we got in at around 6. I had wanted to stay the night with Darcy but I was still so sore and tired that Marie, the nurse who cared for him that night thought I would be better off with a good sleep.
I gave him his one & only bath while he was alive, and Steven, Mum & I had a huge cuddle. Darcy was so alert, he was just staring at me with his beautiful blue eyes. His gaze was so steady, it was as if he was trying to memorize our faces forever so he would remember us. He was wheeled to theatre and I remember running alongside him & telling him that we loved him and we were so proud of him, thank you for coming and if you have to go, we will try & understand.
We went home and spent the day with Anna-Jayne. I don’t think there was a minute that she wasn’t being held be one of us. We went back to the hospital at 1 o’clock and got to the ICU waiting room at around 3 after being buzzed. Dr Jalali came out to see us and told that the surgery had gone perfectly, nothing had gone wrong, but he was very concerned that his aorta was so small. He had actually finished at around lunchtime but had been watching him to see how he would go. He said that even if he did make it through this stage, he would be very very touch and go until his next stage. But, to celebrate this small victory and go & see our baby! We just felt grief that Georgia wasn’t here and we wished they could be in ICU together.
I felt a physical lurch when we walked into the ICU. We could hardly recognize Darcy – he was very puffy and COVERED in tubes. We sat in a daze as about 12 people got him settled in and fussed around. The lovely nurses told us to push on in there and say hello but we just felt so awkward and in the way.
After a couple of hours, the nurses told us to go & grab something to eat and get some breast milk organized. After talking with them we decided to duck home & see Anna-Jayne then go & get a pump for home. They said that they wanted to feed him tomorrow and how settled he was so we set off. We got to the car when I started having pains in my stomach like contractions but I shrugged them off and we left. We got about ½ way home when our pager went off. Steven and I just looked at each other and knew. We cried all the way back to the hospital.
As we were walking into another “quiet room” (gee, I hate them!) behind Dr Jalali, I saw Jacqui & Andrew who were there to see Dr Wight. I looked into her eyes and even though I knew we were going to get the worst news of our lives, I felt an amazing feeling of strength. Jacqui was going through this too, we would get through it together and honour our babies, not be defeated by this.
Dr Jalali told us that Darcy had had a massive heart attack pretty much straight after we had gone. They had tried to revive him but weren’t having much luck. They would still try for us but Darcy would be massively brain damaged and even if they did get him back, they would probably lose him again anyway. There was our “line in the sand”. We said we would know when we got to the stage that to keep fighting would be being selfish and not thinking about Darcy and this was it – our “line in the sand”. We thanked Dr Jalali for everything he had done & for giving Darcy a chance at life but we thought it would be best to let him go with dignity. Dr Jalali agreed and said how very sorry he was and he was glad to have given him that chance. We have met so many amazing people through this journey and Dr Jalali certainly is one of them. As Steven puts it “a bloody hero of a man with a great heart”.
The nurses came and got us to go & see Darcy a little while later. In the short space of time, most of his tubes were gone and what had been a hive of activity and beeping machines was now just a bed with our beautiful angel waiting for a cuddle. Dr Haas had come to see us to say he was sorry and to tell us that we could spend as long as we liked with him. We wanted him forever!!!
We gave him a bath and his Nana, Poppa & Jaynie came to have special cuddles once the coroner had given the all clear for all his tubes to be removed. To start with, we had not wanted AJ to see him but Dr Haas explained that AJ was a part of our family and in years to come it would give us & her comfort to know that she was part of the whole of Darcy’s life – beginning & end. We look back now & are so glad he told us that – he was right about that and a lot of other valuable things – yet another hero!!
The nurses took some polaroids and although we don’t look at them a lot, we’re glad we’ve got them.
We went to Georgia’s funeral the next morning and got to say our goodbyes. Our hearts broke for Jacqui & Andrew. We went after the funeral to the funeral parlour & arranged Darcy’s service. His funeral was on Thursday, June 12th. It was a gorgeous service – a true celebration of his short life. We let off blue balloons to the heavens and instead of a wake, we had a Birthday party for him. We had party food, including Pooh Bear cupcakes and lolly bags for the kids. Even though we had lost our son/brother/grandson/nephew, we hadn’t lost our sense of humour or sense of pride in having had him – even if it was for 2 short days. We laughed in between our tears and thanked God for our special angel. We have never regretted our decision to have Darcy. He has touched our hearts and lives, and many other people’s too. He’s our inspiration, our own slice of heaven and our Darcy.
We found out from his autopsy that he suffered multiple cardiac arrests in utero, so we were even more lucky than we knew to have him at all. What a special little boy to fight so hard to come to earth and say hello. He must of loved us as much as we do him!
