Graham Head's Story
(Son of Sue and Allan Head - Brighton)
Twelve years ago, Graham was born in an atmosphere of emergency and uncertainty.
The days prior to his birth, the doctors at Toowoomba hospital discovered
that something was wrong with his heart, though they didn't know what. The
shock of finding this out plus the fact that I was full swollen with fluid
caused me to go into an early labour. Eight and a half weeks too early, I
was sent immediately to the Royal Women's Hospital in Brisbane. Graham was
born the next day on the 27th July 1988. The team of doctors and nurses on
hand rushed him off to give him the best chance at life.
The next day Graham was transferred to TPCH for a cardiac catheter and, Dr
Andrew Gailbraithe diagnosed dilated cardiomyopathy. We were informed that
the only thing that could be done for Graham was drug management and eventually
a heart transplant.
The next few weeks were a roller coaster of emotional ups and downs for us, and physical ups and downs for Graham, but Graham being the survivor that he is came home for a few days before his actual due date (27th Sept). During this time many, many people were praying for Graham. This combined with the skill of the medical people gave Graham a fighting chance at life.
At this time we were living in a small town on the western Darling Downs called Tara. Graham was a very energetic baby who reached all his milestones at the right time. He grew into an energetic boy. The only indication that something was wrong was that he was small and he had regular visits to DR Gailbraithe. When Graham was two, DR Whight took over his care.
Graham loved being out west. He can crack a whip, ride a horse, catch yabbies and fish. He was allowed to ride his bike around to a friend's house and together they would ride around the town or out to the creek on the golf course. He played tennis; he was in Joey scouts and then cubs. He even won a trophy for tap dancing, though he won't admit to that now.
One swimming season he even won the patroness trophy for swimming club. (He was only allowed to swim 25m in a race). As you can see he led a very normal life. Over the years he only had 4 - 5 stays in hospital, these being for medication change or for a catheter. We always felt like frauds being in hospital when he was so well.
In September 97, Graham had another catheter. This time DR Whight suggested that he hand over Graham's care to DR Gailbraithe (Transplant). This came as a shock to us that DR Whight thought this was necessary. It meant being another step closer to that dreaded T word.
We decided that Tara was too far away from TPCH and we both applied for a transfer to North Brisbane. Thankfully the education department looked after us and we were moving to Brisbane by the end of 97. God blessed us with a beautiful location at Brighton that Graham just loves. He was able to have lots of fun on the creek and in the bush surrounding our place.
The first year was fairly uneventful apart from settling into a new school, new home and making new friends. In September 98 DR Gailbraithe put Graham onto a new drug called Carvedilol. This drug had actually reversed cardiomyopathy in many adult patients overseas and DR Gailbraithe was keen to try it out on Graham. We began to have renewed hope for Graham's future. All went well until March 99. Graham began to have heart failure. He was complaining of tummy pains, which were the result of his liver enlarging with fluid. This was bought under control with Lasix and he was sent home for a fortnight until he had a catheter done to determine what the cause of the heart failure was. The night before his catheter was due I had him back at the hospital with severe tummy pains again. This time it wasn't heart related and he was transferred to the children's hospital. After several tests to rule out things he was sent home on a reflux medication. This seemed to do the trick and needless to say his catheter was cancelled. In September 99 he had a catheter and was taken off his Lasix. In October he had an endoscopy and was kept on Ranitidine. The endoscopy showed that Graham had a hiatus hernia.
Graham was well, energetic and getting on with things. Though in hindsight he wasn't as energetic as he used to be. There was a gradual decline in his stamina. We were hopeful the Carvedilol was doing its job and reversing the cardiomyopathy. 2000 began as another good year, though he had slowed down. One Sunday morning, second week of term two, Graham was complaining of tummy ache again.
Sunday 7th May
During the morning Graham was sitting very quietly in the living room watching TV. Occasionally he would complain about not feeling well and a small chest pain. I thought this pain was associated with his lower dose of reflux medication. I was thinking whether or not I should put him back on the full dose. By the afternoon the pain had progressed, into his arms. It was then that I took him to the local doctor. The doctor seemed to think it was associated with his reflux as well but just as a precaution he wrote a letter to the TPCH in case I decided to follow it through. I immediately went home, packed his bag and followed it through. We were at the hospital and in the children's ward that evening. Graham's liver was enlarged and so he was put on Lasix and monitored.
Monday 8th May
We were home again Monday afternoon. Monday evening, Graham had more chest pain.
Tuesday 9th May to Friday 19th May
Tuesday morning Graham had a scheduled echocardiogram at 8am. After that
I took him back to the ward to report the continued chest pain. He was readmitted
there and then.
The transplant team became involved over the next few days and it was decided
that all the tests necessary for a transplant should be carried out. DR Gailbraithe
was on long service leave and so no final decision was made to put him onto
the list until he returned. During this particular hospital stay it was found
that Graham was suffering angina pain, due to his major arteries being stretched
over his enlarged heart. Graham returned home on Friday 19th May with Lasix
and GTN patches added to his list of drugs. He was to see DR Gailbraithe on
Tuesday the 13th June after he returned from long service leave.
Saturday 20th May to Saturday 3rd June
Graham returned to school and his normal routine over the next couple of weeks. He just had to take care not to over exert himself, which was OK as he didn't feel like doing too much. On Wednesday the 31st May Graham went to his tennis lesson as usual. Not long after it he complained of feeling dizzy and then he vomited. Allan came home from school and took Graham home. On Thursday it was school as usual. Graham had a tummy pain for most of the day but he didn't complain. Thursday evening I had to put a patch on him as he had a chest pain. Friday he went to school, and in the afternoon break he came to me feeling unwell and looking very grey. I put him on the sick bed at school but it hurt for him to lie down. He improved a bit then went back into class. He played golf in the afternoon with Allan. He could only manage a very slow two holes. He went to bed unable to cut his dinner and that evening he vomited again. On Saturday he woke up not feeling well but he wanted to go shopping. After about 15 minutes he had had enough and went to wait in the car. He had a visit that afternoon from Matthew Leach, who had a transplant about three years earlier. During this visit, Graham took him down to the jetty and he was exhausted after walking up the boat ramp. Graham went to bed and was ill again. Graham complained of the pain getting worse and he went to bed. I took him to the hospital that evening and on the way we had to stop to put a GTN patch on him as the pain returned to his chest. He was readmitted.
Sunday 4th June to Monday 26th June (three weeks)
The next few weeks were a roller coaster of emotions. When DR Gailbraithe
saw Graham on Tuesday 6th June this time I became frantic at the prospect
of losing Graham and I rang as many people as I could think of to pray for
him. His case spread like fire and before long someone had even put him on
a prayer chain on the Internet. Family, friends, acquaintances, and thousands
of people we didn't know, were praying for Graham.
A drip was put in for some drugs then a picc line was put in for dopamine.
Over this time it became more urgent for the heart. On Saturday 24th June
Graham took a turn while he was in the toilet. His blood pressure dropped,
he went giddy and nearly passed out. DR Radford witnessed it and let DR Gailbraithe
know. DR Gailbraithe took us aside and explained that Graham was too sick
for a transplant. He believed that Graham wouldn't survive the operation.
We arranged to take Graham home. We figured that his last few days were best
spent in his own home among his family. While he was at home he had John Rosenberg,
a blue nurse, come to check on him each day. He would check that I flushed
his picc line correctly, give me moral support, etc. Friday we had an appointment
at the ward again. DR Gailbraithe was happy with his progress and he was put
back on the list. The only problem was that his sodium levels were dangerously
low. We were sent home with a medication to give him in case he took a fit.
Monday we returned to the hospital to await his appointment on Friday.
Thursday 6th June, 2000
Thursday evening I was giving Graham a bath when Emmy-Lou (his sister) came
to say someone wanted to talk to me on the phone. I told her to get their
name and number and ring back. Fortunately, Allan took the call then. It was
Katrina Brosnan (transplant coordinator) saying they had a possible heart
for Graham. An hour later we were at the hospital (7.30 pm). 10.30 PM we heard
Graham's blood and the donor's blood cross - matched, and then at 1.30 am
Friday morning the physical examination revealed that it would all go ahead.
5 am, Graham was wheeled into theatre, and at 9 am he was in intensive care.
You couldn't wipe the smiles off our faces. He has progressed very well since
then. Each day he was a step closer to going home.
Graham came home on Saturday 15th May and each day he is getting stronger and fitter. The first thing he did was hop onto his new bike and go for a ride around the house. Yesterday he went fishing down the back yard and caught a sting ray.
Graham's story is one of a wonderful miracle God blessed us with.
Sue Head (Graham's Mum)
Last Updated: October 2003
Last Reviewed: November 2003
Other languages