~Casey's Story~

I would like to take this opportunity to say that nothing can prepare you for the emotional roller coaster that you will ride if you choose the surgeries but staying positive and finding anything good in each day will help smoothen the ride. I hope you can see all the good side to this story and hope that it will help in preparing anyone for their journey.

We were devastated when, at my 20wk ultrasound, we were told that our baby’s heart had not formed properly and would probably die within about a week of birth. It was two weeks later after that we found out that our baby had Hypoplastic Left Heart Syndrome (HLHS). We were given three options:-

1.  We could have a late termination,

2.  Compassionate Care( Have the baby and take it home until it passed away),

3.  A risky three stage open heart surgery.

Since I had had a stillborn a few years earlier, I could only make the one decision, to have the surgeries and give our baby every chance of living. We moved our family to a unit at the Royal Women’s Hospital at Melbourne and prepared ourselves for our incredible journey.

Casey Jarvis Court (meaning: Brave in battle.) was born  by natural birth at 4.18pm  on Wednesday 10^th October 2001, at the Royal Women’s Hospital in Melbourne, weighing a healthy 4.015kg. I had opted to have a natural birth instead of an early caesarean as I knew that he would not be fed for a while and needed all the extra weight he could get. After a quick cuddle he was taken off to have an I.V. line inserted for the drug Prostaglandin to given. This was to stop the little duct in his heart from closing over. He was transferred about an hour later by the NETS team to the Royal Children’s Hospital. He was very stable and went straight to the Cardiac ward, 7 West.

As he was so stable and a good size they decided that they would not operate straight away allowing his lungs to develop better. He did however have to have nitrogen added via nasal prongs as his oxygen saturation levels were to high. They do this because if the oxygen levels are too high is can cause scarring on the lungs.

His 1^st operation was on Tuesday 16^th October. This is called the Norwood and took about 7 ½ hours. The surgeon, Dr Christian Brizzard, rang us and told us that everything had gone well and there were no complications. We could come and see him back in ICU in about 45 minutes.

Even though we were prepared for what we were going to see when we saw Casey, I guess words can not describe the emotions that you feel when you see your baby lying on the bed with his chest open and more wires and tubes on him than you can poke a stick at. The chest being left open was because they can not close the chest cavity due to the swelling from being on the by-pass machine for so long. We could see his little heart beating through the clear cover. It was something that I will never forget and soon became quite fascinated by. After a short time we saw past everything and just saw our beautiful little boy and started making sure that he knew who his mum & dad were by touching where we could and talking to him all the time. We soon also found that by listening and asking questions was the best way to learn all about what he was doing and I feel lets you get closer to them. This also helped to understand all the things that you see them doing to him and made it a little less distressing (not much though).

On Thursday 18^th October the first attempt at closing up his chest was made but was quickly re-opened when his blood pressures dropped. Due to a suspected infection and Casey not looking very healthy, they postponed closing his chest again and went to theatre on Tuesday 23^rd October to finally close his chest. It was during this procedure that Casey had his first major cardiac arrest. He was resuscitated only to have another arrest. The decision was made to open him up again and found that his shunt had clotted and blood could not flow, they removed this shunt and put in a larger one but his heart had taken a major beating and was only just functioning. He was put onto a life support machine called a VAD (Ventricular Assist Device) and we were phoned.

The call came at about 11.30pm just as we were about to go mad with waiting. We had called twice already but of course he was not out of theatre yet. We were told that it was only going to take an hour or two and he went into surgery about 5.30pm. We knew that something was wrong we just didn’t realise how bad. Michael went up to hospital to talk to the surgeons; I stayed at the unit knowing that I would not be able to face what was going on. After a million thoughts running through our heads and listening to what the doctors were telling us (Michael was calling me from the hospital to tell me what was happening) we wanted Casey left on the VAD as his heart was still faintly beating. The doctors suggested it might be easier for everyone concerned if we just let him go as they told us that he would have about a ½ percent chance of getting off the machine and if by chance he did survive, he would probably be brain dead. They asked us to name a day soon to turn off the machine, we said Friday 26^th October.

Getting through the next three days was going to be hard especially when the doctors tell you that we can use this time to say goodbye. I can’t put into words how we were feeling at his time, it wasn’t good. We just seemed to cry a lot. Some one suggested that we use our energy flow to help him, anything was worth a go. I don’t know what caused it but Thursday morning I had an overwhelming feeling of joy come over me and I knew that he was going to make it. By Friday even the doctors were amazed and suggested that he be left on the machine for one more day. I could have jumped over the moon, everybody that worked with Casey was smiling again and I’m happy to announce that quite a few of them lost money by betting that he would not make it.

Saturday 27^th October Casey was taken off the machine and hung on. He was going into an arrest the next morning but due to the quick actions of his nurse, Janine, who gave him a shot of Noradrenalin, he stabilized very quickly. He continued to improve and was finally starting to get some milk fed to him. A whopping 1ml per hour!!! How goods that, we couldn’t see how he could survive on this but he did. On Wednesday 31^st October they removed the stint holding his sternum open and wired it up the next day.

On the 6^th November he doing well enough to remove his pacemaker and was removed (extubated) from the ventilator the next day. Unfortunately his breathing became laboured early the next morning and after giving a cocktail of relaxants and other drugs he started to go into cardiac arrest again. He survived again and continued to improve. On the 11^th November it was discovered that a clot had formed in Casey’s Inferior Vena Cava (large vein) in his groin. He was immediately started on a program of high doses of Heparin (Blood thinning agent) to try and dissolve it. Despite these problems Casey still improved. His wound was still open as the edges of it had started to heal over so they had to trim it up and try to promote skin growth so that it would knit together. His chest was officially closed on Monday 19^th November. The next day he was extubated again and was put onto CPAP (constant positive air pressure). This basically blew air into his lungs to keep them inflated but he breathed on his own. It was strange because after coming off the ventilator it takes a while for the vocal cords to start working again.

I finally got my 1^st cuddle since before the operation this day. After 38 days Casey was finally transferred back to 7 West on Friday 23^rd November, He was 7 weeks old.

Once back on the ward he weighed in at less than 3kg, he. He had lost over a kilo. His breathing was still a little laboured but improved over the next couple of days. He even breastfed for the first time and everyone was amazed. He had his first bath on the Tuesday27^th November, which he thought was heaven, and had all IV lines removed the next day. My boy was finally free!!. A couple of days later he was put into a normal cot and allowed to wear his own clothes, he nearly looked like a normal baby (except the NG tube).

Casey continued to improve and had his first day leave on Sunday 1^st December. He was fully breastfed at this time and was even minus his NG tube. This day was the most wonderful and scary day. He  soon had the NG tube put back down as he began to tire a lot. He was started on formula feeds but he did not seem to tolerate very well and began brining them back up. On Friday 21^st November he gagged on one of these feeds and had a respiratory arrest or vagal response (stopped breathing). He was immediately intubated ( put on the ventilator) and transferred to ICU. This was the beginning of what we all termed “Freaky Friday Fortnights”. It was discovered that he had a tummy bug and was started on a course of antibiotics. Casey spent his first Christmas there but the day was far more enjoyable than thought could be possible thanks to the Staff of ICU & 7 West. Christmas lunch was provided and gifts for Casey and his two brothers, Santa visited and lots of volunteers came to sing carols and spread some joy. Casey’s best gift that day was to be extubated and was free to enjoy his Christmas gifts. Boxing Day he was transferred back to 7 West.

Once again he improved and was doing very well. He was having some blood tests done, which of course he didn’t like, and had another respiratory arrest. It was exactly a fortnight since he had his last one, he was intubated and transferred back to ICU. This visit was only for three days and we were back on the ward. He was fussy for a couple of days but this was put down the fact that he had an IV line in his head (scalp vein) as they could not find any good veins elsewhere, they had all collapsed. After this was removed we started to see Casey at his best, he smiled a lot seemed quite happy and now weighed 4.445kg.

Friday 18^th January 2002, Casey was once again transferred to ICU. This was the third fortnight in a row that he had a respiratory arrest after being badly constipated. A Cardiac catheter was performed on him to check out his heart and this showed it to be functioning well. He had been intubated again as a precaution this time and just as well as Saturday his saturation levels dropped to 47%. I really got to see what they mean about turning blue that day, he stabilized and seemed OK once again. Sunday Casey’s temperature started to rise and he started to have convulsions. He was immediately started on anti convulsion drugs and paracetamol. Tests were carried out but nothing showed up so Meningitis was suspected. As Casey was on high doses of Heparin because of his clot, the doctors decided not to do a lumber punch as this could cause bleeding into the spinal cord so he was treated with antibiotics just in case. Before this had happened we had been told that Casey’s 2^nd surgery was booked for Wednesday 23^rd January but now because of all these problems the operation was put back a week and it was decided that Casey would stay in ICU until then.

About the same time that Casey landed himself back in ICU one of his little buddies, Noah, also returned to ICU. He too was kept in ICU until his 2^nd stage which was the same day as Casey’s. Noah had never been outside and Casey had only had the one day so the Staff of ICU decided that the boys should have “A Big Day Out”. On Monday 28^th January, the staff found portable pumps for the boys IV drips and took them outside to the heliport area for an Australia Day Picnic (this was the public holiday as the 26^th Jan was a Saturday). The weather had been terrible until about an hour before we went outside but the sun shone beautifully while we were out there. The champagne tasted wonderful and also helped to calm a few nerves about the next day when our boys would once again be in Surgery.

Tuesday 29^th January, Casey was taken into surgery at 8.30am; he was now 16 weeks old. After about 6 hours we received the phone call to say the surgery was successful and after a couple of days he was transferred back to 7 west. By the 7^th February his NG tube was pulled out as he was feeding well enough. He now weighed 4.865kg and was improving in leaps and bounds. We finally flew back to Darwin & home on the 20^th February 2002. Casey was 19 weeks old.

I would like to make a special thank you to “Aunty Deb” who through this wonderful web site made everything a lot easier to handle while we were going through one of the hardest times of our lives. Because of her special dedication to our cause, more and more people are learning about HLHS. We would also like to thank all the wonderful staff from the ICU and 7 West at the Children’s Hospital, Melbourne, for all their dedication and quick actions. Casey is only here today because of these people.

Trudy & Michael Court