Sunday 30 April

30 April 2006
The cardiac team were not overly worried about the ectopic beats today after spending some time last night evaluating the rhythm and rechecking blood tests in the early hours of the morning. The upside of doing the blood tests was that we found out that the renal function was improving. William seems to be coping again so his captopril was restarted at a lower dose today.

Slowly...

29 April 2006
William's feeding has dropped off a bit today. He is only managing about 5-10ml orally, either from the breast or bottle and the rest has to go down his tube. He is still breathing pretty fast as well. The team ceased one of his medications (captopril) as his kidney function was not crash hot. He also has had some ectopic beats (extra heart beats) which may be related to an imbalance in his electrolytes. Really he is going pretty well still but all these things remind us that we are on a long road. Still, one foot in front of the other and one day at a time is the way to get to the end of the road.

More Firsts

28 April 2006
William continues to do well and today he notched up some more “first time for...” moments.
He had his first breast feed! We were concerned that at this stage having only fed from a bottle, that he might not breast feed. The instinct had persisted though and he latched on to Liza well. He is only really allowed ten minutes on the breast every three hours. Breast feeding takes a reasonable amount of energy and the main concern is that he puts his energy into growing at this stage. He gets the rest of his milk through the nasogastric tube. Nonetheless, we are really happy about this latest step in the right direction.
William needed a chest x-ray this evening and up until now they had always been performed on the intensive care ward. Now we are in the cardiac ward, we have to go to the x-ray department and so I was permitted to disconnect all his leads from the monitor and carry him out of the ward in my arms to the radiology department. It felt wonderful to be walking with him, alone and bundled up without a monitor attached.
Olivia and Thomas arrived today and so we had another move to a bigger room in Ronald McDonald House. It was wonderful to have them again. It is quite a struggle to balance the time William needs at the moment and look after the kids as well but well worth it. We do miss them and they miss us.

Discharge from PICU

27 April 2006
William has finally made it out of the intensive care unit. He was transferred this afternoon to the Edgar Stephens Ward which is the cardiac unit at Westmead Children's Hospital. We were hoping to go back to the Grace Neonatal Unit – mainly because we knew that they were used to nursing such young babies and that there would be a greater nurse to patient ratio. It is a lot harder to leave William and get some rest when there is not a nurse in his room most of the time.
On the positive side though, he is getting better. He is healing and drinking reasonably well. (He will have to cope with all his fluid and food requirements orally rather than down his nasogastric tube before he is discharged from hospital.)
He did get his intravenous cannula out today and his morphine infusion was stopped so he is connected to the wall a little less than yesterday. He is still monitored with four chest leads, a blood pressure cuff and an oxygen saturation probe all connected to a machine to keep track of his vitals.
We are really looking forward to a day when he is free from monitors and tubes, when we can take him outside and show him the sky, when we can tuck him into his own little bed without the beeps and lights of the hospital.

Remaining well

26 April 2006
William has remained well today. We are still in PICU but he has really been behaving himself and healing well.

Progress

25 April 2006
William is in a bassinet today. Since birth he has been nursed on a specialised neonatal bed which has an overhead warmer, heated gel mattress, monitoring and infusion pump stands and its own power supply. Today he is on a regular mattress and we are wrapping him in flannelette cot sheets to keep him warm – just like a normal baby! The achievement for today was William managing to take a 30mL bottle all by himself without the need to put part of it through his nasogastric tube. He remains in PICU (paediatric intensive care unit) but will be transferred back to Grace NICU (neonatal intensive care unit) when a bed becomes available.
We are extremely appreciative of all the support we have received through e-mails and messages. It is so encouraging to know so many people are thinking and praying for him. We are sorry we have not been able to get back to everyone but please do not think that we do not appreciate your support and thoughts! Whilst we do long to be home with William and his brother and sister, Liv and Tom, we do not feel at all alone here with so many people thinking about us and supporting us.

Tubes Out!

24 April 2006
Yesterday was very much a day of not much happening. (Of course William was busy doing a lot of healing) Today a lot happened.
William had a peripheral intravenous line put in to his hand. He had his antibiotics stopped. (His T3 infusion and nitroprusside was stopped last night). He had his atrial central line (one of the tubes that fed intravenous medications directly into his heart) removed this morning. He then had the two pacing wires that were inserted into his heart muscle pulled out. After a while he had the mediastinal drain removed. At about 11 o'clock he was disconnected from the ventilator and had his endotracheal tube removed. In the afternoon he had his urinary catheter taken out and his arterial line removed. The only things still connecting him to the machines now are the three chest leads to monitor his ECG and respirations, his intravenous line in his hand, his saturation probe and his nasogastric tube! This was definitely not enough to prevent us from cuddling him today. We had a lovely time holding him for the first time in nine days.
At 5:30pm, William was able to have a feed. Most of it had to go down the tube but we were allowed to give him a bottle to suck. He hasn't quite got the hold of that yet – He is two weeks old today and this was the first day he was able to take milk by mouth; and only the fourth day he had any food at all.
Pos and Pa and big sister Olivia and big brother Thomas visited today after their holiday in Orange with Aunty Sarah and Uncle Matt. It was wonderful to have all our children and we long for the time when we might be able to all be home together.

Stability in PICU

22 April 2006
Today was a day of rest and planned little change. William remains intubated and ventilated. He had a bit of vomiting today, probably related to a potassium supplement which has produced a fair amount of gas in his stomach.
He overall is tolerating things pretty well but all babies have to cry a bit some times. The hardest thing for us to watch is our little boy trying to cry but no sound coming out.

Formal chest closure

21 April 2006
William remained well today and at about 1:45pm he was taken back to theatre by David Winlaw to close his sternum. We seem to be making that trip too frequently, following behind his little bed with the anaesthetists bagging him as they push him along. The pager went off just over an hour later with the message that he would be back in PICU in 15 minutes. We hurried off to the unit and found William back already! His sternum had been closed easily and he needed no inotropes during or after the operation! It was wonderful to see him coping so well. Six days after his first trip to the operating theatre his chest was finally closed. The next step will be extubation (removing the ventilator helping him breathe). We are really hanging out for a cuddle again!

Steps forward

20 April 2006
From the time the blood pressure started to respond this morning, William has done very well. His adrenaline and noradrenaline(which were increased about eight fold over-night) were able to be completely weaned right off today. His peritoneal dialysis catheter was removed. His midazolam was stopped allowing him to wake up a little. He is still pretty groggy with a reasonable dose of morphine going through his central line. With some of the infusions coming off he has a small enough intravenous fluid rate to allow an increase in his feeds to two millilitres.
It seems that the most likely reason for his instability last night was low thyroid hormone levels which occur as a result of the stress of the operation or the iodine prep or both. Anyway, whatever the reason, he seems to be coping better today so we are much happier and will sleep better tonight.

Steps backward

19 April 2006
William's blood pressure became a little low this afternoon. It was not crash trolley time and he handled it fairly well but nothing would seem to get it up to the target that had been set. Increasing fluids did not help, increasing adrenaline and noradrenaline didn't seem to do anything to his blood pressure or his heart rate. Increasing his heart rate with pacing did nothing. When the registrars changed over several things were all re-tried without effect. He had an echocardiogram at 6 pm and another at about 11:30pm. His heart function seemed reasonable for this point of time. He was started on a couple of high powered antibiotics in case there was sepsis (or generalised infection). He was given cortisone and then an infusion of thyroid hormone (in case the iodine prep used before the operation affected his thyroid levels)
Things were really not at all well controlled until about 4:30am on Thursday morning when suddenly he turned the corner and increased his pulse and blood pressure.

Open Sternum

19 April 2006
William generally has had a good morning. He has a reminder message taped to his chest to say that although his skin has been closed, his sternum is still open (so he is not rolled or moved). Some of the inotrope medications were weaned to much smaller dosages this morning. He has his endotracheal tube changed without incident and he started feeding! At the moment they are not sure his gut will take much so he is getting one millilitre every four hours. That means he will get about a teaspoon a day – not much but a start! The other great thing today was that he opened his eyes and was looking at us. His eyelids are still puffy but he got them open enough to make good eye contact.

Closing the chest (almost)

18 April 2006
William is looking very puffy today. He went to theatre for his chest closure this afternoon at 5:45pm. About an hour and a half later he arrived back onto the intensive care unit. David Winlaw, one of the paediatric cardiothoracic surgeons told us that they had tried to close William's sternum but the extra pressure on the heart caused it to function very poorly and they felt that he just wouldn't cope. They left his sternum open but just closed the skin over the top. They were able to remove two of the pleural drains today so at least there is some more chest visible.
It is disappointing that the aim of closing William's chest was not reached today but at least there was a (half) step in the right direction. He will remain intubated and ventilated until some time after his sternum can be closed. With the skin closed, the edges of his sternum will be held a little closer and that will make things easier at the next step. At this stage the sternum closure is planned for Friday but of course we know how many changes can happen to plans before then.
We are appreciating the level of care from all the medical staff and especially the nurses. A couple of nurses from Grace ward have been over to visit him and the PICU nurses have also been wonderful.
Olivia and Thomas went back to Pos and Pa's (Ros and Bob's) house this afternoon. It has been wonderful having them around and Bob and Ros have been absolute lifesavers looking after them while we head up to the ward to sit with him. Marea has also frequently been making the trek over from Cronulla and has been a great support helping with the children.

Early days in PICU

17 April 2006
William has remained stable today. He has started to pass adequate amounts of urine today (he was not really passing enough yesterday) The cardiothoracic fellows visited this morning and have scheduled William's chest closure tomorrow. We are aiming for a day of very little change.

Easter Sunday

16 April 2006
Easter Sunday. As we celebrate the resurrection and life of Jesus, we also are thankful for the life of our little boy, William. He has been stable since last night. He has a Christmas tree of syringe drivers with flashing lights next to his cot. The adrenaline, noradrenaline and milrinone remain at the same dosages. He is also on vecuronium, morphine, midazolam, potassium, frusemide and FFP. He is gradually becoming more swollen as fluid collects in the tissues. He had a wash today and with some moving of probes, his left arm is completely free of tubes and wires and is there for us to hold.

The Stansel Operation

April 15
It was an early start today as we made our way to the ward at six o'clock so that we could give William cuddles and a wash before theatre today. He was scheduled to be in theatre at 8am but happily for us did not leave until 8:10am (ten extra minutes of cuddles!).
We followed him around to theatres and were asked at the door if we would like to give him a kiss goodbye before he went off. We felt incredibly emotional but in a strange way, things were so totally out of our control until he came back from theatre.
William's operation is described as a Damus-Kaye-Stansel procedure, a Sano shunt and an atrial septectomy.
The DKS procedure (or Stansel as it seems to be known) involves dividing the main pulmonary artery before it splits into the left and right pulmonary trunks and then connecting it to the aorta so that outflow from the right ventricle through the pulmonary valve goes directly into the systemic circulation. It also flows back down to the towards the aortic valve and perfuses the coronary circulation. The Sano shunt is a 4mm gortex tube which goes directly from the right ventricle into the pulmonary circulation thus creating two outflows from the ventricle. The atrial septum is removed so that the inflow from both the systemic and pulmonary circulation mixes and flows into the right ventricle.
In about four months time the shunt will be removed and the upper body venous circulation will be fed directly into the lungs. At age of about three the lower body venous circulation is connected directly to the pulmonary circulation.
We left the hospital to make our way back to Ronald McDonald House and catch up with the kids. Marea stayed the night and mum and dad came over in the morning. We played with the kids and sat down to lunch just after midday when our page from the paediatric intensive care unit (PICU) started beeping. This was our cue to make our way up to PICU and wait for William. When we got there they told us that he was due out of theatre in half an hour and that Professor Chard would be coming to speak to us soon. We waited for a while and before too long he came out and told us that the operation seemed to go pretty much to plan. William was off bypass and maintaining his own circulation without excessive ventilation or inotrope support. We were told that we could see him shortly. From there we waited almost an hour and a half until the surgeon came out again to let us know about the problems that we had been warned of. William's heart function had dropped. He was not able to maintain his circulation. This was possibly due to the non functioning left ventricle acting as a splint. He was going to have to have his chest reopened, or rather re-explored as they had not completely closed it. Professor Chard explained that he may need ecmo (essentially a pump that takes blood from the venous return or atrium and pumps it into the aorta, adding oxygen on the way) We were able to go in and have a quick look and stroke his head before dragging ourselves back to the PICU waiting room again. The wait was long but the news was worth it. When his chest was reopened a significant pericardial collection was around the heart causing some tamponade (or compression preventing the heart from functioning properly. When this was removed the cardiac function picked up immediately and they really felt that no further operative management was required. This was great news as ecmo adds another significant risk factor to the mix.
We still marvel at the skills required for this surgery. William's heart is smaller than a walnut and such delicate repairs seem the stuff of fantasy. Seeing him was no dream though. He had a peripheral line in each foot, an arterial line in one wrist, a double lumen umbilical catheter, a triple lumen central line, a mediastinal chest drain, a peritoneal drain/dialysis tube and two pleural drains, pacing wires, a urinary catheter an anal temperature probe, a nasogastric tube and of course the endotracheal tube for ventilation. His chest was still open with a a thin covering obscuring the view of the organs but not hiding the pulsation of his little heart. We sat with him for a while and returned again after dinner to wait and watch him – fortunately it was not overly exciting. We have a long way to go though.

Four days old

April 14
William stayed stable today. He has been in a head box which has been diluting the room air with nitrogen to decrease the amount of oxygen William is breathing. Oxygen opens up the blood vessels in the lungs but if that happens to William then less blood gets shunted around his body. He has not needed to be ventilated yet and we feel so blessed that we have been able to have him with his face relatively free form tubes. He does still have three chest wires for monitoring both respirations and his ecg, a saturation probe, a tcpCo2 monitor, a skin temperature monitor, an peripheral intravenous cannula and a double lumen umbilical vein catheter. It is not an easy task but certainly still possible to get him out for a cuddle. He seems so happy to get cuddled. We hold a mask near his face with nitrogen for him to breath and he generally maintains all the desirable numbers on the monitor.

Three days old

April 13
The specialist appointments are starting to diminish. We met with the neonatologist again today and phoned Professor Chard's rooms to give him our decision. We would hand over our little William with the hope and faith that the chance of life would overcome the threats of complications.
We tried to sit with William as much as possible.
That evening we visited Ronald McDonald House for a dinner. Bob and Roz joined Olivia and Thomas and us for an introductory meal. When we told the house manager that William's grandfather and father were the first to stay at the Ronald McDonald house in Camperdown, twenty five years ago, we were shown a room that had been set up as a replica of one of the original rooms. It triggered memories for me and certainly mum had enough memories to require a few tissues.
We trudged back up to the hospital to see our little boy again. Dom Frawley had made his way up to Sydney to visit. It was lovely to introduce him to our son.

Deliberations

12 April 2006
At about 8:30 this morning we were sitting by William's bedside, pondering all that had happened in the last 36 hours. The whole reason for his early delivery was the chance of helping his left ventricle grow. That hope was now gone and now there was the decision of taking our baby out of the intensive care for a few days of normal cuddles or pushing ahead with the the uncertain outcome – the chance of not coming through the operation, the chance of not making it out of hospital, the chance of significant disability or the hope of a reasonable life with a disability that he can cope with.
We discussed the options again with Steve Cooper the cardiologist. Richard Chard, the surgeon made time for us today in his rooms and answered all our questions. The one thing no-one can answer of course is what will the final outcome be.

Changing options

April 11
William's first twelve hours went pretty well. Steve Cooper, the cardiologist arrived a bit after 7am and redid the echocardiogram. He felt that the left ventricle was borderline in its size and function. The possibility of a two ventricle repair was so dependant on the left ventricle being adequate. He advised us that although the two ventricle repair was still an option, the one ventricle repair was probably safer. We had a hard morning talking about our options but finally after many gut wrenching hours and plenty of tears, we decided to go ahead with the two ventricle repair even though it was more risky. When we met the cardiologist again at lunch time he told us that he had discussed the results further and really was trying to convey the very small risk of a successful outcome with the two ventricle repair. We held fast though and so he arranged the cardiac surgeon, Richard Chard, to come and see us that afternoon. The surgeon sat us down and told us that the two ventricle repair was not an option, he would not do it for us. He talked about the single ventricle repair and explained a Stansel repair with a Sano shunt. This was apparently similar in the outcome of the procedure done in Melbourne and he felt that despite very high operative risks, if William survived there was a good chance of reasonable quality of life.
We left that meeting with very mixed emotions. Prior to meeting the surgeon, the neonatologist had a long talk to us about the possibility of palliation or no active treatment. After talking with the surgeon, we knew that we would have to go back to the hard decision making again.

Welcome to the world, William Hodgkins!

11 April 2006
At 8:37 pm on the tenth of April, William Robert Wilson Hodgkins was born. I caught him on his fairly rapid exit from the birth canal and for just a minute there were only the three of us in the room. Before long it was 'all go' though as the room filled with midwives, residents and a porter ready to bundle little William into a humidicrib transport and race him over to the Children's Hospital. I cut the cord and Liza got a little hold and even a brief suckle after the weighing. (2475g or 5lb 7oz) then William was put into the perspex transport box and wheeled along half a kilometre of corridors to the Grace Neonatal Intensive Care Nursery at Westmead Children's Hospital. They were ready and waiting for him and he was carefully bundled onto his little bed and the wires and tubes were all attached. Liza turned up about fifteen minutes after me, having been driven to the Children's Hospital by the obstetrician. She was definitely one of the faster discharges lasting less than 15 minutes after delivery before her discharge.
William got to meet some of his family who were waiting patiently all day for his arrival. Olivia and Thomas met their brother, and William also met some of his aunts and uncles and his grandparents.
William had an echocardiogram almost as soon as he arrived on the ward. It was a restless sleep for Liza and I, who were fortunate enough to be able to stay the night in one of the emergency parent rooms on the ward.

We are having a baby!

April 10
After a fun day at the Easter Show on Saturday and a day of organisation more than rest on the Sunday, we were finally off to have a baby.
We struck peak hour traffic on the way to Westmead and then struggled to find parking before walking a considerable way from the car to the hospital. There was a long wait before Liza was initially induced with Prostin. The obstetrician ruptured the membranes at a bit after 6pm and a syntocinin infusion was started just after 7pm. Liza was into the first stage of labour from about this time. We were given instructions to let the midwives know the moment Liza felt any urge to push as it probably would not be long and they would need to notify the obstetrician immediately. She really only felt the urge to push at 8:36pm.

Later results after the balloon

27 March 2006
This time we new that the results from today's investigations would be definitive. There was no chance we would hear "that it is to early to tell for sure".
Steve Cooper saw us first and from the first views of the ultrasound images, I could tell that things were not looking good. Steve was quiet for a while and explained that he was doing all the measurements.
His opinion was that the left ventricle had not really grown much since the last study and the valve certainly had not increased in size. The small jet of blood making it through the aortic valve was only 1 mm across.
Steve told us that he felt that because no further benefit to the ventricle was likely to eventuate now, the baby's best chance was with an early delivery with a plan for a balloon valvuloplasty soon after birth with further surgery planned for after that.
We made our way to Greg Kesby's rooms in the city and he pretty much knew from the look on our faces that he was not going to see a great picture today. Apart from the heart though, everything was progressing really well! The head circumference was on the 50th percentile for dates and the abdominal circumference was holding steady on the 10th percentile.
Steve, Greg and several of the other members of the team met on the Wednesday afternoon then discussed things further over dinner at Greg's house that night.
The next morning before work I phoned Steve Cooper, to anxious to wait any longer for their news. He told us that the consensus from all those present the night before was that the ventricle had a chance if the valve could be opened soon. The plan was to induce Liza to deliver the baby on Monday the 10th of April, stabilise in intensive care on the 11th and perform a balloon valvuloplasty on the 12th. If things seemed to be going well, there might be scope for an operation on the valve a week to ten days after that.
We knuckled down, and went into full on organisation mode trying to prepare ourselves emotionally and logistically for an extended torrid stay in Sydney just over a week from then.

Early results after the balloon

27 February 2006
We returned to Sydney, three weeks after the operation to look at how things were going. We were to see both the Steve Cooper (the paediatric cardiologist) for a foetal echocardiogram and Greg Kesby (the obstetrician) for an ultrasound - essentially the same thing but slightly different machines which both have their pros and cons. We had been praying hard (and had lots of people praying hard for us!) but nonetheless were feeling a bit anxious. We knew what worse case scenario was this time.

We were told that although it would have been nice to see the baby's heart looking better than it did, it was not as bad as it could have been. There was some growth of the left ventricle and there was also some movement. The flow through the valve was still restricted but the specialists felt that it was much better still than before the procedure. They both felt that if we hadn't done anything, things would have been significantly worse at this point. Neither was prepared to guess if the improvement so far was enough but naturally it is very early days in their experience and also in the recovery.

Discharge from Royal Prince Alfred Hospital

10 February 2006
After several days recovering, Liza was eventually disconnected from her intravenous lines and was able to get up and about. We were pretty keen to get home again.
We had been visted every day by both Rob Ogle and Greg Kesby and the great news of course was that the procedure had been a technical success. They had been able to dilate the valve up to 3.5 mm and there was good flow going through the newly stretched valve after the procedure.
The staff on the maternity ward were so good to us and handled our fragile state very well. Nonetheless, there is no place like home and we were so happy to be driving back down to Tapitallee.

Foetal aortic balloon valvuloplasty

6 February 2006

Liza was admitted to Royal Prince Alfred Hospital. We were certainly expected and felt a little like VIP patients. We knew the procedure was an Australian first and meant a lot to everyone involved.

Around lunchtime Liza found herself in the operating theatre along with a team of eight specialists (three obstetricians, three cardiologists, two anaesthetists), several registrars, several nurses and a handful of technicians for the equipment used.
Liza was anaesthetised and a cut made to expose her uterus (similar to a caesarean section but bigger). An ultrasound was placed directly on the uterus to see the baby and it was pushed and manipulated into a good position to continue. When they had the baby pushed into a position they felt was good, they put a needle into the uterus and into the baby's thigh to anaesthetise and paralyse it. Then another needle was put through the uterus and after three attempts, passed through the baby's chest and directly into the left ventricle of the baby's heart. A wire is fed through this needle and after a few attempts threaded through the narrowed valve opening (less than a millimetre wide). A balloon is threaded over this wire and through the valve and inflated to stretch out the valve. We knew from the early figures that were available from Boston, six out of the twenty attempted never made it this far. The team were successful in our case though and after several hours Liza came back to Adam pacing anxiously on the ward. Three out of the twenty had miscarriages after the procedure and again we passed that risk. The grey area we entered is that even after a successful procedure with no untoward effects on the baby or Liza, only a very small percentage of the babies were born with the desired outcome - two ventricles functioning.

Aortic stenosis and possible Hypoplastic Left Heart Syndrome

23 January 2006

We booked in again to check on the progress and this time Steve Cooper, the cardiologist's report was not so rosy. The tightening of the valve had got worse, much worse in fact and was hardly letting any blood through at all. In the foetus there is a bypass mechanism so the foetus was actually growing well enough. The left side of the heart was not contracting though because the obstruction of the aortic valve was too tight to force blood through it. This causes damage to the heart muscle and basically the left side of the heart stops growing and ultimately cases hypoplastic left heart syndrome. The baby is born without a functioning left ventricle and thus without any way of pumping blood around the body after the various changes to the circulation occur a few days after birth. We were given all the options and they all seemed pretty dismal. The cardiologist did mention an experimental procedure that they had done in the USA and that they were considering doing at some stage in Australia. He gave us all the negative stuff on it - the fact that they hadn't even practised on animals in Australia, the fact that the outcomes were not great even looking at the figures in an optimistic light. He said that he felt obliged to tell us about it because it was on the horizon and conceivably could be performed even though that wasn't an established or even initiated as experimental in Australia. Liza and I discussed it and within a day or two had decided to go for it. We knew the ultimate outcome if we did nothing was that our baby wouldn't live long and while even though the same outcome occurred in most of those having the procedure done overseas, it was something for us to grasp and pin our hopes on.

The following week we were back in Sydney to meet the other members of the team that would be involved. Greg Kesby is an obstetrician who specialises in antenatal intervention and would be our main obstetric point of contact. We also met Gary Sholler, another paediatric cardiologist who would be there. We didn't get to meet Rob Ogle, another obstetrician who would be involved until the following week, but we spoke with anaethetists, social workers and the neonatal intensivist. It was exciting but really scary.

The 19 week ultrasound

7 December 2005

Liza had experienced a pretty normal pregnancy. We were on holidays at Vincentia and took the opportunity to travel to Wollongong for the routine ultrasound. (Olivia was going to a Wiggles concert on the same day)

At the 19 week ultrasound, we were told something was wrong. The umbilical cord had only two vessels instead of the normal three and the heart chambers or ventricles were not the same size. There was also decreased flow through the aorta. We were upset and uncertain, anxious and almost numb, knowing this was definitely not good news.

We were back up the next day for another scan with the specialist, Warren Davis and then on Monday 12 December we travelled up to Westmead to meet with Steve Cooper, a paediatric cardiologist who would perform an antenatal echocardiogram – a specialised ultrasound of the heart.

Steve certainly gave us some hope. He though the left ventricle was in good shape, and that the only real problem was some narrowing of the valve which at this stage was pretty mild. He reassured us and felt that although it may get worse, it could probably be all managed easily at birth.