Story

Hi my name is Sandra and along with Callum's Dad Robert we would like to tell you about Callum's amazing story of survival against all the odds.

When I was 20 weeks pregnant and attending a routine ultra sound, I was told by the sonographer that she was having trouble seeing all four chambers of my baby's heart. After waiting a while to see if the baby would move, she checked again but sill she couldn't see the fourth chamber.

At this point Robert and I weren't too concerned as the sonographer had said that it was probably just the way the baby was lying but to be on the safe side she asked the obstetrician to come in and have a look. To our relief the Obstetrician said that she could see the fourth chamber but our happiness was short lived as she said that although she could see it, it appeared to be significantly smaller than the other chambers.

We weren't given a diagnosis as the obstetrician didn't specialize in Cardiology but she did advise me to have an amniocentesis as most heart defects are associated with chromosome malformations such as Down's or Edward's. We were in total shock, frightened of the unknown - how bad was it? Was it treatable? What if the baby had a chromosomal disorder too? I was also very upset at having to have an amnio because of the risk of miscarriage but was told it was better if they knew exactly what we were up against. I had the amnio there and then.

We had to wait 3 weeks before we got the amnio results, in the mean time we were sent to the Queen Mother maternity hospital in Glasgow to see a Cardiologist and get a diagnosis. Our whole world fell apart that day, our baby was diagnosed as having an extremely rare heart condition known as Hypoplastic Left Heart Syndrome. It is were the left pumping chamber, known as the ventricle, doesn't form properly. It is very small and often doesn't have valves, in Callum's case it didn't even contract.

It is a fatal condition if it is left untreated. We were given three options:

1. Have a termination

2. Compassionate care (take the baby home to die)

3. Three step palliative surgery over a period of 5 years

We chose the surgery, it has only been in the last 10 years that treatment has been offered in the UK and the outlook was still very grim, we were told there was only an overall success rate of 30%. Also that if I had the baby any earlier than 36 wks gestation it was probable that there would be nothing they could do.

The only good news we did received was that the amnio results came back clear and we were having a little boy!

The plan was to have the treatment in Birmingham Children's Hospital (which was 480 miles from home). Since the first surgery would be within the first few days the baby was born it was planned that Callum should be born at a local maternity hospital in Birmingham when I was 38 weeks. (Jan 3rd 2001) However, Callum had a different plan in mind!!!

I went in to labour at 5am Wednesday 27.12.00. I arrived at the maternity hospital around 6am to find that I was 5cm dilated. Things were moving fast there wouldn't be time to send me to Birmingham, they would have to send Callum on his own after he was born. To make matters worst there was a storm happening and outside there was already a foot of snow!

The labour went straightforward and Callum was born at 1.22pm weighing 6lbs 11oz.

Here is his first ever photo

He just looked perfect, you would never have known what was going on inside his little chest. We only had time to each put a finger in one of his tiny hands, he squeezed our fingers so tight, before he was rushed away to intensive care.

During the birth, the storm outside was worsening and there were warnings that the airport was going to close.

Callum had to be transported paralyzed and ventilated as the journey could be very traumatic on him and could cause him to go in to destress.

Unfortunately, Birmingham Children's hospital Intensive Care Department was full and they couldn't accept him. They wouldn't allow him to be admitted into the general Cardiac ward if he was ventilated, as they don't have the equipment or staff to deal with it. We had to make the decision whether to fly Callum unventilated and not paralyzed and allow him to be admitted onto the Cardiac ward or wait until tomorrow for the chance that an I.C.U bed would become available. We didn't have a lot of time to decide we didn't want Callum to miss his only chance of survival the airports would close at any minute. We chose to let Callum go his flight was the last one to leave the airport before it closed.

The following day after I was discharged we traveled the treacherous journey by car to Birmingham to be with our son. We had known he had arrived safely with no problems on the journey but other than that we had no idea how he was doing. We didn't arrive until late Thursday night. We found Callum sleeping peacefully in his incubator. We had been told that an echo had been performed and that the right side of Callum's heart was functioning well and also that the main arteries on the left side of the heart were of a reasonable size. This would increase Callum's chance of survival and recovery from the first operation, we were now given an 85% chance of getting through stage one!

The first surgery took place on Saturday 30th December 2000; Callum was 3 days old.

This surgery, out of the three, is the most risky and difficult. The worst part for us was taking Callum to be anaethetised. It is bad enough knowing that your child is about to go through major open heart surgery but it broke our heart to carry him into that room place our tiny bundle on a huge table and watch his little body go limp as they administer the anaesthetic, then having to turn away, walk out the room and wonder - Will we ever see him again?

The surgery lasted 4 hours, the longest four hours of our life. Callum was transferred down to the huge intensive care ward. If I thought I was in shock before, this really put me on the edge. I knew what I was supposed to expect, we had seen pictures of other babies in I.C.U, even visited the unit the day before - but nothing prepares you for when it is your own baby. So many tubes and wires coming out from every part of his little body and a sticker on top of his bandage saying "Chest Open". I knew he would have this on him, the chest is left open for the first few days to allow for any swelling of the heart but it is still such a tremendous shock to see.

Mr Braun, Callum's surgeon (and in my opinion the most amazing surgeon on the earth, he helped pioneer the surgery that they use to treat HLHS), came to speak to us. The surgery had gone very well but the next 7 days would be critical, we would just have to watch and wait.

Here is Callum just hours after surgery:

Callum was recovering well but for the first few days, because his chest was still open he was kept sedated and paralyzed. The paralyzing drug is very strong and can build up in the body, so every day the intensive care nurse would stop the infusion, wait for a sign of movement and then start it again. If they didn't do this, when it came to stopping the drug altogether and wake Callum up, it would take a few days because so much of the drug would still be in his blood stream.

It was quite a momentous moment when one night, exactly at 12pm on Hogmany, Callum moved and squeezed his Daddy's finger just in time to bring in the new year! It was one of the best moments in his Daddy's life!

Everything was going well, Callum had his chest closed 4 days post op. There were a few set backs, Callum developed a clot in his bladder (where a catheter) had nicked him) and also had slight renal failure. It is expected that most children will develop renal failure in the first few days post op. In fact, they insert the dialysis tubes during the surgery in preparation.

These minor problems soon sorted themselves out but then Callum developed a suspected case of NEC (Necrotising Enterocolitus) an extremely dangerous and potentially fatal intestinal infection. Although it was never confirmed they had to treat Callum as if he did have it as it was too risky to just wait and see how it developed. This meant that Callum was not allowed to be fed to give his gut a chance to heal and was put on a strong course of anti-biotics.

During this time, it was harder to wean Callum off the ventilator, he had been lying flat for so long, fluid had settled in his lungs and had made them partially collapse. Callum found it difficult to breathe without any help.

On Callum's 9th day in ICU, after lots of physio, the ventilator was finally removed and we could get to see our little boy's face properly for the first time in over a week. Callum was transferred back to the cardiac ward the following day.

Here is Callum's first photo with no ventilator!!!

Callum spent another 2 and a half weeks on the Cardiac ward. As Callum had been fasted while he had NEC, his stomach would not tolerate any food. His milk intake had to be built up very slowly starting at 1ml and hour. It took 2 weeks to build up to a target of 15mls an hour before he could have bottle feeds. Callum's chest wound had also started leaking and opening in some areas. His immune system had been unable to cope due to Callum not being fed for so long.

Friday 26.01.01, we were finally transferred back to Glasgow to spend a few days in Yorkhill Children's hospital before being allowed to go back home to Aberdeen. Callum was 4wks and 6 days old, it was a milestone in his life that we had conquered and although it was a happy and joyous event, we would miss the wonderful and talented staff at Birmingham Children's Hospital. They had played such a vital role in both Callum's life and ours during such a traumatic time.

Callum is 10 weeks old now; we still have to get his wound redressed often as it is taking a long time to heal. He is putting on weight gradually and looks like any other healthy little baby. It took a while to get used to giving him all of his medicines but now it is just second nature and we are all coping very well. We have wonderful staff at our local health Centre in Inverurie, especially our GP Dr Fiona Mckay, Callum's 2 Health visitors, Jill Chalmers and Catherine Nicol (they have been a Godsend). I also can't forget my Midwife Sue Routh who was an endless support to me during the very hard months of my pregnancy. Words cannot express how grateful Robert and I are for all their help and support.

We don't know yet when Callum's second stage will be but we expect it will be around April when he is 4 months old.

We are still unsure about the future, we have been told that they expect Callum will suffer from heart failure when his is in his late teens. They are not certain though as the oldest living child in this country is around 10yrs old. I do know that in America there is an 18yr old boy who is doing very well and is taking no medication what so ever. So, who knows what the future holds, we are just going to take each day a step at a time.

I'll keep you all informed of Callum's progress by updating this site. Until then I would just like to say to any Mum's and Dad's out there that have just discovered their child has HLHS, don't give up, there is light at the end of the tunnel and Callum is living proof of that.

Hello Again, it's now April 22nd and Callum is still doing very well. He weighs just under 11lbs, smiles, giggles and is a constant joy to his Daddy and I. We are going back to Birmingham on 22nd of May for Callum's Catheter test and his Second stage surgery will be the following day.

I would be lying if I said I wasn't worried about it. I think it is going to be harder on Robert and I this time. We have spent the last 4 months getting to know our wonderful little boy. He just seems so healthy and I can't bear to think that we could still loose him. I have every faith in Callum's surgeon and all the staff at Birmingham Children's hospital but I still feel sick when I think I have to take him back there.

The recovery for the second stage should be shorter with only an overnight stay required in ICU and if we are lucky just a few days on the ward after that. It is too complicated to explain what happens in the second stage surgery. However, I believe it is along the lines of rerouting the unoxygenated blood from the upper body away from the heart and directing t straight into the lungs. (Check out Little Hearts Matter) The surgery should increase the oxygen in Callum's blood stream and give him a little more energy.

Well, I'll keep you all informed of Callum's progress but until then keep your fingers crossed for us!

It is now August 6th, Callum had his second stage on May 23rd and is doing wonderfully.

The week leading up to Callum's surgery was very stressful for obvious reasons but to make things worse Callum took an infection in his wound and ended up being admitted to Yorkhill Hospital. This was 5 days before we were supposed to leave for Birmingham. The Doctors in Yorkhill told us, that it was likely that Callum's surgery would be cancelled. They called Birmingham and were told that they would wait to see how Callum progressed on a course of IV antibiotics before they would decide on the fate of his surgery.

When Monday came Callum's wound was still red and sore and we were told from Birmingham that the surgery would be cancelled.

Poor Callum was beside himself he was on IV antibiotics 4 times a day and he found the administration of them very painful. He also was having blood taken 3 to 4 times a day so as you can imagine it was very distressing for him.

With Callum's heart condition, he has very small veins and his IV's kept falling out this meant they had to be reinserted nearly every day.

It got to the stage that whenever Callum saw a stranger he would just burst into tears as he just expected they were there to hurt him.

Anyway, we had just resigned ourselves to the fact that Callum's surgery was cancelled, when the surgeon from Birmingham called and told us that it was still on. He planned to cut away all the infected tissue and didn't predict that there would be any problems going ahead with surgery. We had to leave right away, just as well we had already packed!

So from one minute being upset that the surgery was cancelled to being upset that it was going ahead - we were on an emotional rollercoaster.

We arrived late that night. Callum had his catheter the next morning and the surgery the following day. I am pleased to say that everything went wonderfully!

After surgery, Callum spent one night in ICU and after 4 days on the ward, we went home! It was amazing how quickly he recovered this time. When he woke up in ICU, what a rage he was in! Trying to pull out all his lines, he got so bad they had to sedate him - what can I say, he's a fighter!

He continued to be very wary of strangers and still cried when anyone came near him, even if it was just to change his nappy but who could blame him after everything he had been through. The best thing was he could still manage a smile for his Mummy and Daddy!

It took Callum a few weeks to settle after we came home (we moved to Glasgow in-between all this!!) he was still wary of strangers for a while but it didn't take long for him to settle back to his normal self and now there is no stopping the smiles and the laughter.

He is 7 months old now and this week he cut his first tooth but one wasn't good enough for him and two days later number two appeared. Now he proudly grins to show everyone what he has in his mouth. He is still on the small side but he is catching up, he is trying to sit by himself but he hasn't quite mastered it yet. He loves picking up anything and sticking it in his mouth or waving it wildly in the air, turning around to see if there is anyone watching him and of course there always is.

I will continue to keep you updated on his progress, thanks to everyone who has signed his guest book or e-mailed me, your support is very much appreciated.

Hello everyone, it's now January 11th 2002. I hope you all had a nice Chirstmas and a great New Year. Well the year 2001 may have passed but it is certainly not a year we will forget in a hurry, it has been full of up's and down's but I am pleased and thankful to say more of the up's than the down's.

Callum is doing as well as ever. He had a great first Christmas which you can see photo's of by clicking here. It really was a day to remember but an even better day was Callum's Birthday on the 27th of December. (click here to see photo's)

Callum can now sit by himself, zoom around in his baby walker but there are no signs of him crawling. He will walk if I hold his hands and take some of his weight but I think we are still a little while away before he will be walking himself.

He now weighs around 20-25lbs (just guessing he hasn't been weighed in a while but will be on Wednesday so I'll update then) is in the right clothes size for his age (a first!) and now has 3 teeth. He still has as much energy as ever and chats non-stop, I really am so happy with his progress.

He doesn't have another cardiac appointment until May and his only medication is Captopril (4mg) 3 times a day.

He really is doing so well that sometimes I have to remind myself that he has HLHS. He is my little miricle baby and I'll keep you all posted on his deveolpments.

Hello again, it's now May 18th 2002 and I just thought I would drop in to give you the most recent update on Callum. He went for a cardiac check-up last Friday and his heart is doing really well.

They were a little concerned about his weight as he has stayed around 21 lbs for the past few months, so we are getting referred to see the dietician. I think his weight gain has slowed down due to the fact that he is mobile now (what I mean by that is he bum shuffles! No signs of walking yet but you should see him go!). None the less they want to see him gain more weight in preparation for stage three, which will hopefully still be a few years away but better to deal with the problem now rather than later.

I brought up the fact that he was making very little attempt to walk but they said it was hardly surprising considering what he has been through. I understand that but you can't help worrying, I just wanted to make sure there weren't any under lying reasons for it. The doctor did say that if he wasn't walking or making reasonable attempts to walk by August they would look into it then.

So everything seems to be going well, he had an echo and his heart is working wonderfully. No change to his medication, so all in all it was a pretty positive check-up!

Hi everyone, it's now May 2003. Sorry it has been such a long time since I last updated Callum's site but it has been a pretty busy year for us all.

Callum is doing really well, he has been walking since around October last year and his speach is really coming on. He still has an issue with his weight, which is around 26lbs but we no longer have to see the dietician and haven't done so since November last year. We were at the hospital a few days ago for his routine cardiac check up and he got a good report. His heart is functioning well and the doctor was really pleased with him. We don't have to go back for another check up until November which is good but also nerve racking as the Doctor told us to expect that he will be discussing the arrangements that will take place for Callum to go for his third stage. So it has started to bring all that back to my mind again. After second stage you think you have ages before you have to worry about him going into hospital again but the time has just flown by. Callum has just been so well that it's easy to forget that there is anything wrong with him. Apart from giving him Captopril 3 times a day, him having the odd blue spell and going for check ups every few months, life had been pretty normal for him at home.

The other big news for Callum is that he is a big brother now! He has a little sister called Amy who was born on March 11th, 2003. Thankfully she has no medical problems what so ever and Callum just adores her. He is constantly cuddling her and kissing her, he is the perfect big brother.

So here are some pictures of Callum and his little sister

May 11th 2004

Callum has come on leaps and bounds! He is no longer a baby and watching him change into the happy little boy he has become has been marvellous. He had his last cardiac check up last week and yet again got a good report. His sats are sitting at 80 which is fantastic and he had an echo which showed good ventricular function. We have been told to expect that he will have his third surgery later this year as they usually like to perform it around the age of 4 but it will really depend on how much his health deteriorates through out the year but they most definitely would have it done before he starts school (Aug 2005).

Callum started at Bankier nursery in January and he just loves it. I have to say that I was a little apprehensive sending him to nursery, worrying if he would be able to keep up with the other children and also worrying if the Nursery staff would be able to spot if he was going into heart failure with so many other children to look after. But I needn't have worried as the staff at the nursery have been amazing!

I can't say enough just how thankful I am to Louise Duncan, Grace Wright and Margaret Kerr for taking such good care of my special boy. I especially have to say a big thank you to Mrs Jean Majury, the head teacher at the nursery, as she has been so great, I feel so reassured and totally at ease with leaving Callum in her care. He just loves her to bits and I know she has played such a big part in settling him into nursery and making sure that all his needs are met.

Some other news I have is that Callum is a big brother again! One year and a day after his little sister Amy was born I gave birth to a little boy Robbie. Callum is just delighted to have a little brother but politely told me that he doesn't think Mummy should have any more babies!

So here are some pictures of Callum and Robbie

Feb 2nd 2005

Callum has continued to grow well in the last year and has not really shown any signs of slowing down. His oxygen levels at his last check up were still 80% and there was no change to his medication.

He is really enjoying his second year at Nursery school and I can hardly believe that after the summer he will be going to school!

We have been given a date to go back to Birmingham for his third operation which is the 18th of April. His catheter will be on the 19th and his surgery will be on the 20th. I am really dreading having to take him back to hospital as I know he is going to find it very distressing. I have told him that he will be staying at hospital for a while so the doctors can make his heart work better and that it will mean he will be able to run around more just like his friends without getting tired so quickly. He seems quite happy with this explanation but I know nearer the time I will have to tell him a little more of what to expect when he goes to hospital but I am really worried that it is going to frighten him but at the same time he needs to be prepared for what lies ahead so that he is not taken by surprise.

This surgery holds approx a 96% success rate. Again in basic terms they will be re-routing the unoxygenated blood from the lower half of the body directly on to the lungs and by-passing the heart so that should leave he heart pumping only oxygenated blood around the body. For a better explanation than I can give please look at the Little Hearts Matter web site.

We have been told to be prepared to stay at hospital for around 4 weeks. Hopefully it won't be as long as that but the Doctor said that some times there is fluid build up in the chest after the operation and the drains have to stay in place longer until the fluid subsides. They can't predict in which children this will happen but it is very common.

I'll up date again as soon as I can after his surgery so you can all know how he is doing but until then please keep him in your thoughts.

It is now September 12th, 2005. I am so sorry it has taken me so long to update Callum's site, things have just been quite hectic around here.

Callum had his third stage on May 18th and it went very, very well! The first operation was cancelled due to bed shortages so we had to wait 4 weeks to be rescheduled.

Callum's stay in hospital was only 12 days and was only 10 days from when he had his op. He recovered very well and there was such a noticeable difference in him the moment he came out of theatre, for the first time in his life he was pink and was warm right down to the tips of his fingers and toes!

He was still ventilated until the early hours of the morning following the day of his surgery as they didn't attempt to wake him until they got his pressures stabilized and his core temperature up. I'll never forget that as he slowly regained consciousness he managed to mouth to me "Hi Mummy" (there was no sound due to the ventilator still being in place) and soon after managed to communicate to me that he wanted that ventilator taken out which the doctors did. He only spent one night in intensive care and was transferred to the HDU ward the following afternoon.

The worst thing post op had to be the fluid restrictions that he was put on. Initially he was only allowed 10 mls of water every hour, and he found this really distressing as he was just so thirsty. He kept pleading with his dad and I, and anybody who would listen for some water and it was truly heart breaking. He spent his time staring at the clock willing it to move on to the next hour so he could have another drink. Then, true to what the nurses said, when his fluid intake was increased over the next few days it was really difficult to get him to drink anything and we had to practically force him!

After the stage three operation the biggest side affect is the fluid drainage from the chest. Callum had three chest drains in place one beside each lung and one in the centre of his chest. The amount of fluid that drained from them was unbelievable! Unfortunately, during the surgery a fat carrying vessel was cut which also resulted in there being a fatty substance referred to as chyle (don't know if I've spelled that right!) also draining from his chest. It is a very common complication that occurs during surgery and Callum had to be put on a special low fat diet for 6 weeks to give the vessel time to heal. Once he went on this diet the amount that drained from his chest reduced dramatically and within a few days the Dr's removed all of the drains, and the next day we were allowed to go home!

Callum is now on Warfarin, a blood thinning drug that has to be monitored regularly through blood tests that he has done via a thumb prick at the local hospital. We have just been put forward for home testing so hopefully we should get a machine home soon and I'll be able to do the tests myself. Warfarin was quite a scary prospect for us as the drug is very difficult to control, the affects are different for every person that takes it, so trying to find the right dose can take a long time. Also there is the risks that go along with being on blood thinning medication, like severe prolonged bleeding or internal bleeding if he has a bad cut or fall. We are learning to deal with these issues it just takes time to get used to all the do's and don'ts.

Callum has come on leaps and bounds since this surgery. He has a lot more energy and I still can't get over the difference in his complexion, he has nice rosy cheeks now instead of blue tinged ones! The Dr did say at his last check up that he would like for his oxygen sats to be a little higher as they were only at 88% (they were at 94% right after his op) he said it could just take time for things to settle down but that he might need to close his fenestration (the little hole that is left open during the op) via a cardiac catheter next summer but we will wait and see how he does over the next few months.

The other big milestone in Callum's life is that he started school in August and he just loves it! He is really enjoying the challenge of learning new things and it has been great at helping him to put behind him everything he has been through this year.

The school which he attends, St Patrick's, in Denny have been great and have really helped Callum settle in well. I have to thank all the staff for everything they have done and are still doing to make sure that Callum is safe during his time at school, especially Mrs O'Donnell the head teacher, who has been fantastic, Mrs Byrne his class teacher and Mrs Kanikula his classroom assistant, to whom I feel very reassured to be handing Callum over to their very capable hands.

I'll up date again soon, but untill then I'll leave you with some pictures of Callum starting school!

November 24th, 2006.

Callum has been doing really great and has came on well since he had his last operation in May 2005. He is now in his 2nd year at primary school and is really enjoying it.

I did have some concerns with regards to restrictive movement in his legs. I'll give you some examples, when Callum runs he runs with very short strides and cannot run very fast. He also is very hesitant when coming up and down stairs but particularly with going down stairs. I mentioned this when he was last in for a cardiac checkup in August and was told that he may have suffered some brain damage during one of the operations that took place when he was a baby and was referred to see a neurologist. We went to see the neurologist in October and it has been confirmed that he has very mild Cerebral palsy. It was explained to us that Cerebral palsy is brain damage that occurs before the 1st year of life and can affect upper and lower body movements and various other parts of the body. We were told that Callum is being affected very mildly by this in his legs only and that he doesn't have any muscle weakness. Basically what is happening to him is that his reflexes are very sensitive and when he puts any exertion or increased pressure in his legs then the reflexes kick in and restrict his movement. (That's the only way I can explain it :-)) So we are to now to be referred to see a physio to see if there is anything they can do to help improve this. The damage may also be affecting his perception when he looks down and that may be one of the reasons he is so hesitant coming down stairs so we have to see another Dr about that too. We are still waiting for the appointments to come through.

The Cerebral Palsy doesn't affect him greatly so we are not overly concerned although it was a shock when we first found out. Callum lives life to the full and doesn't let anything stop him so we are taking a leaf out of his book and trying to not be too concerned about it.

We also now have our own INR testing machine at home and it has been great. No more 60 mile round trips to the hospital for blood tests and missing school. Callum is great and doesn't mind getting his thumb pricked but it took me a little while to get used to it but like everything else though I am sure it will soon become second nature.

I'll update again after Callum has his next appointments and let you know how he is getting on.