Alex’s Story

(Written in 1995)

Hi, my name is Heather and I am the mother of three-and-a-half year old Alex, our HeartKid, and am also a new member of the HeartKids committee.

As I sit here and try to put into words what my husband Wayne and I have been through with Alex, looking at him run around the house like a steam train, it’s hard to imagine that it ever happened, but, as other HeartKid parents know, the pain and despair fades but the memories are always there.

Alex’s story is fairly long so I’ll try and keep it as short as possible. Our story starts when I was about 27 weeks pregnant, that was when things started to not go according to plan. I ended up in hospital with high blood pressure. I am a midwife so I knew this wasn’t good news, and I got to 31 weeks before my doctor thought we’d deliver by caesarian. ‘A premature baby” I thought, but nothing could prepare us for the worst news six hours later.

Alex was born on the 29th of June, 1992 at 2.29pm weighing 1500 grams (3lb 5oz). Wayne and I were over the moon, he seemed normal, only small. He was whisked off to Intensive Care to be checked out. At this stage we had no name so he was just ‘Baby Hudswell’. Six hours later the paediatrician told us something was wrong with his heart, I was so drugged up that it didn’t really sink in. I thought ‘oh yeah, nothing major’, but l couldn’t really focus straight because of all the drugs I was on.

At IIpm that night the cardiologist told us ‘the baby’ had an A.S.D., pulmonary stenosis and pulmonary atresia. I think I went through about three boxes of tissues, I couldn’t stop crying and I couldn’t believe this was happening to us – why us? The cardiologist said it could be fixed, but Alex was too small to do anything major at present. He would have to grow to at least 2500 grams, that was a kilo he had to put on. Well, as HeartKid parents we know all about them putting on weight – it seemed like months away.

The cardiologist did a cardiac catheter on Alex when he was 24 hours old to dilate his pulmonary artery and to try and make a valve out of the tissue that was where his valve should have been. Alex was 1500 grams and very oedematos at this stage, but after his fluid retention was treated his weight actually went down to 1250 grams. Alex was ventilated for about a week and spent nearly nine weeks on intravenous prostaglandins to keep his duct open until he would hopefully grow big enough to have a shunt. There were many ups and downs in this period that are too numerous to mention, there were times when we thought that he’d just given up, and the struggle was too much for him to cope with – then he’d pick up and look excellent, although he was blue instead of pink.

Wayne and I also found this hard as at the time you think you’re the only one in the world that’s going through this, your friends and family try to understand but words can’t describe how you feel. That was one thing that we found hard, we have no family in Adelaide, they all live in Victoria, so we felt quite alone at times and friends seemed to be busy.

Alex grew steadily and reached 2250 grams at 8 weeks when it was decided he’d have another cardiac catheter in Adelaide. The catheter seemed to have gone well, but Alex just wouldn’t pick up, his saturations kept declining. He had the catheter on Thursday afternoon and by Sunday he hadn’t improved at all, his saturations at times going into the 30 – 40 % range. It was decided to transfer him to Melbourne for the shunt the next day. Alex would go by Air Ambulance to Melbourne.

The shunt was done on the Tuesday morning and there was immediate improvement. The relief we felt was immense. He was off the ventilator the next day and starting to look normal again. He was up on the ward on the Thursday and now he was feeding. All I wanted to do was breast feed him and hold him close like I did before his operation. The relief we felt to see our “Little Man’ looking pink, feeding and for the first time in 8 1/2 weeks not to have an I.V. in some part of his body was just indescribable. But the biggest joy was Wayne giving Alex his first bath at 9 weeks of age.

We spent I0 days in Melboume and then came back to Adelaide, hopefully to go home but Alex had hypercalcaemia for unexplained reasons and we spent another 9 days having twice daily blood tests. Alex was nearly eleven weeks old when we took him home at a healthy 2630 grams.

At ten months Alex wasn’t gaining any weight and his veins were sticking out on his head and neck so another cardiac catheter was performed. It was decided it was time to return him to Melbourne again for a total repair. On the 16th of July, I993, weighing 7.9 kgs Alex had his total repair of shunt closure, A.S.D. closure, Tricuspid Valvuloplasty, Pulmonary Valvuloplasty and right ventricular muscle resection. This went really well, as you can see by the photo, which was taken about two and a half days post-op.

Everything seems to be going really well now and every time we look at the photo we think how lucky we are to have such a predous little boy who amazes us with everything he does, especially when there were numerous times when we thought it might not be possible. With all the pain and trauma Alex has been through I sometimes think that he came out of it stronger than I did as it still brings a tear to my eye on occasions.

Looking after premature babies all the time I now have a better understanding of how the parents feel having been on ‘both sides of the fence’. It has been a learning experience for us all as I’m sure other Heart Kid parents would agree.

UPDATE – August, 1997

Well hello everyone – just a short update on Alexs’ story since his first appeared in the 1995 Christmas newsletter. Well, we’re happy to say that all has been going really great for him over the past few years. Cardiac wise he had his last check-up in April this year and all is going really well and he doesn’t have to go back for another check-up for two years.

Our relief to hear that everything is going really well and that it’s two years until the next check-up was great. It is always with great anxiety that we as parents go to these check-ups and keep our fingers crossed that all is fine. I think before we went to this we were prepared for anything just in case because we didn’t want to get our hopes up too high, knowing full well in the back of our minds that Alex has been really well since his total repair and showed no signs of cardiac problems.

Since the last story Alex has been full on go go go, he never seems to slow down, it’s like he’s going to run out of time to do everything. He’s attended kindy and enjoyed every minute of it. Another one of the biggest moments in his life, and I’d have to say ours, is that Alex started full time school in reception. He looked so grown up, it doesn’t fell like it’s been five years since he was born and we had all that worry and heartache. Back then it never seemed like he was ever going to make it to his first birthday let alone school and it brought a little tear to my eye not just for the fact that he was at school but also for the relief to see that we all made it through that hard time and came out at the end much stronger people I think.

We’ve got the usual anxieties of new parents but with the added worry that we hope he can cope with school and not tire himself out too much. As most heart kids parents know it is hard to let their kids go out into “the big wide world” on their own but they have grown up and they need it and so do we.

The only big drama that we’ve really had is that Alex developed an abcess on his gum from a knock to a dead tooth and we had to have a trip to the dentist and have it drained. Not the most pleasant of experiences for either of us but it had to be fixed and a course of antibiotics followed as we didn’t want endocarditis creeping up on us.

I thought I’d put this photo of Alex in to show how this special “HeartKid” of ours has grown into a gorgeous little boy and despite the rough start to his life he still smiles all the time.

South Australia