Daniel's Story

Daniel Christopher arrived on the 27th December 1990 after a relatively uneventful pregnancy. Having had a pleasantly short six hour labor Daniel decided to catch everyone on the hop and was delivered by his father while the staff were out of the room collecting equipment, Doctors and other apparently unnecessary items.

On day two Daniel was diagnosed with a clearly audible murmur after two cyanotic episodes had caused such panic among the staff they were compelled to retreat to the staff room for cups of tea. Apparently so overcome that they forgot to notify the obstetrician until some hours later.

And so it came to pass just three days after Christmas that we were sent forth into the wilderness in search of a Paediatrician. Daniel was carefully gift wrapped in hospital issue humid crib and bundled into an ambulance, the hospital being fresh out of donkeys. I wondered if this was how the wise men felt as they set off on their journey - not knowing what to expect but hoping for good news at the end of the road.

Staff at Nambour. were so overwhelmed by this unexpected gift they were not sure what to do and after careful examination they decided to share the joy. They carefully re wrapped Daniel and added an Oxygen cylinder to the gift package before forwarding us on to Brisbane.

We passed through the hallowed portals of The Prince Charles Hospital for the first of many times at precisely night time on the 28th December. My record keeping at this point was a little lax so all I can tell you with certainty is that it was dark and I was still wearing my nightgown.

Thus commenced a long, blurry night of beeping things, startling anatomical diagrams and explanations of problems never before heard of much less experienced. Relief from this situation was provided in the form of my bed, in the geriatric wing of the hospital where my three elderly room mates supplied welcome relief between feeding summons from paeds.

They were a delightfully mismatched and thoroughly dotty trio who had little idea where they were and absolutely no inkling of the dramas unfolding around them. Upon waking in the midst of a heated discussion regarding the day and date I wasn't sure if I should laugh or cry and hoped it might all be a dream.

Needless to say it was all too horribly true and it was decided after more testing that Daniel had Transposition of the Great Arteries, complex sub-pulmonary stenosis and was either uni ventricular or had an enormous VSD. Surgery to insert a palliative shunt was scheduled for the following day with further as yet undecided surgery to follow later.

Daniel's Oxygen SATS improved throughout the day and talk switched to the possibility of sending him home untouched to be shunted at a later stage.

Late in the afternoon surgery was cancelled and we all sat back to wait and see. Unfortunately the reprieve was short lived as he deteriorated through the night and late the following day surgery was re-scheduled for New Years day. He was baptised at 10.30pm the night before surgery and we all went to bed hoping he would start the new year in much better health, and quietly hoping the surgical staff had a cheerful but restrained New Years Eve.

Dressed in an impossibly small surgical gown Daniel was taken into surgery at 8.30am on the lst of January, 1991.It was late afternoon before we were called to ICU to be told he had come through the surgery well and they had inserted a large shunt that should be effective for about 3 years. We were warned that this would be the f first in a long series of steps and that each step would be more difficult and risky then the last.

It was hoped to perform a FONTAN procedure closing off the right side of the heart, re-directing "blue" blood away from the heart, through the lungs and, by allowing only oxygenated blood to pass through the heart giving the illusion of pinkness. There was discussion prior to surgery of possibly attempting reconstruction of the heart using baffles to form artificial walls and reversing the Transposition etc. It was, however, at this stage completely uncertain what could be done and there was every chance they would only be able to insert a larger shunt.

Daniel seems to have a predilection for significant dates and he was admitted for his second surgery on Australia Day 1992 aged 2 years 1 month. The surgery was performed on the 27th January and was his first Open heart.

Once again he was velcroed into a slightly larger surgical gown and wheeled away through "those" doors. After what seemed a lifetime but was probably only about 7 hours we were called up to ICU again. Far scarier than any trip to the principle's office and no less awe inspiring second time around. This time my brilliant initial response was, "He's pink!" Again the staff accepted the inane without comment and we heaved a sigh of relief at another successful surgery.

We were told they had done the FONTAN but reconstruction was out of the question. Not only were the Ventricles unmatched sizes they were also reversed and there was no Ventricular septum of any sort to attach a baffle to. The positioning of the transposed arteries was also found to be complicated and not easily corrected. He was not to have such a smooth recovery this time around and reacted very badly to the morphine.

This resulted in almost 12 hours of hell and displays of gymnastics another parent in the unit said they would have believed physically impossible after open heart surgery the night before.

Once the morphine was withdrawn all settled down again and apart from amazing fluid retention overnight he began to improve. Having exercised so vigorously during the post op reaction he required no Physio and recuperated rapidly. Nine days after surgery we returned home with a pink, active incredibly hungry new child with SATS an unheard of 96%.

On maintenance Warfarin to prevent clotting and diuretics for persistent fluid retention he went from strength to strength, our only concern being the behavioural side effects he suffered from the Warfarin. Very hyped and aggressive we agreed after a year to trial him off the warfarin. Initially we enjoyed the new calmer Daniel but after 2-3 weeks he began having "blue" spells again.

These became progressively more frequent and severe and in January 1994 he was admitted to Club Charlie and re-started on a high dose of Warfarin. Within two days his INR levels were up indicating the Warfarin was working and the spells stopped. Arrhythmia's were ruled out, a tear in his pericardial patch was re checked to ensure it was not increasing and since all else proved negative it was assumed he had been developing clots without the Warfarin and deemed necessary to remain on it indefinitely.

Since it now seemed we had no choice an alternative anticoagulant was suggested and we replaced the Warfarin with Phenindione as soon as Daniel returned home. It seemed like the answer to our prayers, his INR levels were stable for the first time ever and there were no behavioural effects at all. "Why didn't someone tell us about this a year ago?" we asked each other in amazement. We should have known it was too good to be true. The hidden flaw with this drug was that allergic reactions are usually delayed and that patients allergic to warfarin are usually more allergic to this medication.

"Why didn't someone tell us about this three weeks ago?" we asked each other in amazement as Daniel turned funny colours, came out in spots and began to swell like a balloon. Once again his timing was impeccable and we celebrated our wedding anniversary by admitting Daniel to the local hospital.

At this point we were not sure what was causing the problem and suspected some exotic tropical virus caught by eating fruit in unfavourable lighting conditions or something equally interesting. As time went on and so did the swelling all tests returned negative and shaking his head in bewilderment the Paediatrician took souvenir photos and sent us off to the Royal Children's for another opinion. By now we were fairly sure the drug was responsible and a final blood test taken in Maryborough proved this to be true.

In Brisbane the horrific reaction continued to twist and turn and do amazing things to our poor little man and eventually he developed Congestive Heart Failure so severe it was felt to be irreversible and he was moved to ICU.

As we have all seen in the past these amazing little people refuse to be beaten and Daniel spent a week in ICU watching videos and eating everything that wasn't nailed down.

The drug reaction had caused such severe skin damage, both inside and out that he had been unable to eat for almost two weeks. It was only as the skin problems resolved that the heart problems occurred and I think Daniel just felt this was quite normal and as long as the skin swelling receded and the pain stayed under control he saw no reason to curb his normal activities.

After a total six weeks in hospital he was discharged the day before his little sister's 2nd birthday and just in time for Easter with his three delighted siblings and exhausted parents. These additional problems have finally been brought under control and although he is allergic to every second thing he comes in contact with he is convinced he is "Super Dan" and completely invincible. We tend to agree and only hope his luck continues to hold.

On Australia Day 1995 he was admitted to the Royal to investigate a run of mild seizure activity and Kidney calcification. The calcification was put down to long term diuretics and no cause was found for the seizures. The diuretics were ceased to prevent further Kidney damage and surprise, surprise the headaches and seizures stopped along with the medication.

When Daniel decides he has had enough of a good thing he makes sure we all know about it. Luckily there were no repercussions from withdrawing the diuretics and we have now weaned him off everything except the Warfarin and his asthma drugs. Catheters done before his last discharge from TPCH showed an additional coronary connection that overrides normal circulation intermittently and causes a "blue" spell until things revert to normal by themselves. Daniel barely seems to notice these episodes, which is fortunate since it can't be corrected.

I'm pleased to report that Australia Day 1996 was blissfully spent doing NOTHING!

Daniel is now in Grade 4 and while it isn’t his favourite place to be he is coping fairly well with school – there are good days and awful days but so far this year the good have outweighed the bad and we hope for a less eventful and less frustrating year for him then the previous ones have been.

We have absolutely no idea what the future holds for Daniel – it’s a wait and see as it always is. All I wish for Daniel at this stage is continued good health, all the luck he deserves and, perhaps, just a little extra height - for dealing with his very tall "little" sister.

Thank you seems incredibly inadequate considering all the staff at Club Charlie have done but it is all I can say. There are no words for the joy (and interest and gray hair) Daniel has brought into our lives and without their help I know he would not be with us today. Life without "Super Dan" would be very dull indeed!