Brave boy ready to come home
Published: February 17, 2006
TOWNSVILLE’S ‘bubble boy’ is finally coming home.
Six months ago, Harrison Saunders and his family set off for a holiday at the Gold Coast but they never left Brisbane’s Royal Children’s Hospital.
Medical tests discovered Harrison had been born with ‘boy in the bubble’ syndrome, a one-in-a-million genetic disease which left him with no immune system.
He was not allowed to kiss his mum or play with his brother and his relatives could only wave at him through a glass window on the door of his isolation room.
But now, after chemotherapy, radiation and a bone marrow transplant, the Saunders’ are ready to be a family again.
Harrison’s release from hospital supervision, possibly as soon as May, will mark a major milestone in his family’s battle to cope with the severe disease.
The 15-month-old boy was one of the world’s oldest children to be diagnosed with his rare strain of Severe Combined Immunodeficiency Syndrome (SCIDs).
Last August his parents left Townsville, and the dream home they were building, for some medical tests at the Royal Children’s Hospital to help explain Harrison’s niggly runny nose and chesty cough.
But the holiday, planned for the following week, never came and they never returned home after the hearing the devastating diagnosis.
“He had more than 16 courses of antibiotics in eight months and nothing worked,” his mother Tammy Saunders said yesterday.
“He was at the pediatrician up to four times a week.”
At eight months of age, a pale Harrison was too weak to lift his head.
Extensive tests revealed what no one had expected - he was suffering from a fatal disease and should have been dead.
After the diagnosis Harrison was rushed into strict isolation in a sanitised room with a filtered air supply.
“You had to gown up and wash your hands 50 times before you could go in,” Mrs Saunders said.
“I was allowed in to care for him but his brother Mitchell (aged three) could only see him through the window.
“After the transplant everyone had to look through the window. He would look back and blow kisses.
“It was horrific not to be able to kiss him . . . so hard to not care for him the way I would normally and he did not know why I could not do it.
“It was heartbreaking for me but a cold could have killed him.”
Paediatric immunologist Jane Peake said Harrison had a severe and rare form of SCIDs.
Dr Peake said only 10 per cent of SCIDs kids got the IL7 Alpha Receptor Deficiency.
“If you talk about immune deficiency the thing most people remember is the boy in the plastic bubble but these days we do not treat them in a bubble but a room which has to be germ-free, clean and sterile,” Dr Peake said.
“He has SCIDs which means the immune systems don’t work and without one you cannot survive . . . it would be fatal.
“It affects the T cells which determine immunity and at the moment the only treatment is a bone marrow transplant.”
Medical specialists had warned the family Harrison might not have survived until a transplant donor could be found.
And Dr Peake said the procedure for the illness had not been around long enough to guarantee it would work.
“I could not give any promises - no one could,” she said.
Mrs Saunders said doctors did not hold much hope.
‘They call him the miracle child,” Mrs Saunders said.
“It is one day at a time.”
Harrison was the first child to present with the rare strain of the disease at the hospital in nine years.
Mrs Saunders gave up work to stay with Harrison on a fold-out couch in the bubble room while her husband Ivan transferred his work to Brisbane to watch Mitchell.
Only a week after Harrison’s diagnosis, a normally happy an nouncement turned bittersweet. Mrs Saunders found out she was pregnant.
Doctors said the newborn would have to be rushed to isolation. “We discovered we were pregnant again - there is a one in four chance this baby will be sick too and will need a bone marrow transplant,” Mrs Saunders said.
“Once he is born he will go straight to isolation.” And after months of not being able to kiss Harrison, she may not be able to hold her newborn be fore he is whisked away for treatment.
“I don’t know, I can’t think about that right now,” Mrs Saunders said through tears.
Dr Peake said she was trying to get a diagnosis from the baby be fore he was born.
“And if he has the same condition, we will have to treat him straight away,” Dr Peake said.
Mrs Saunders said she focused on getting Harrison better to help her cope - and that meant frequent visits to `transplant land’ - a place where all the children were sick.
“The things you see down here are frightening, in Townsville you are so sheltered,” she said.
“It was really confronting, we would go for pre-transplant talks and it was full of really sick kids with no hair. It was the reality of what was to come.”
Dr Peake said Harrison had to undergo chemotherapy and radiation to `condition his body to accept the marrow’.
Then the one-year-old’s hair fell out.
Doctors at the hospital pulled double shifts to watch over Har rison before the transplant and to search for a bone marrow donor.
“He had no immunity at all and his only chance was a transplant,” Mrs Saunders said.
“Ivan and I pinned all our hope on Mitchell because a sibling match is the best.
“When Mitchell did not match it was the end of my world. It destroyed us. We had assumed things would be fine.
“Anyone could wait so long for a match but because he was so des perate for it they searched and searched.”
After a litany of blows, good news finally came to the family.
“They found an adult male who would donate. He was a 10 out of 10 match and we were over the moon,” Mrs Saunders said.
“The day the procedure was scheduled we were excited but so frightened.
“Things happen with donors; they change their minds, they go missing or they just don’t show up.”
Harrison was scheduled to go to theatre at 2pm and late into the night there was still no marrow.
“We did not know what happened to the donor,” she said.
But at 11.45pm news came that a stream of emergencies had pushed the donor’s theatre time back - and at midnight the life saving treatment began.
The marrow was gravity fed into a major blood vessel in Harrison’s heart.
“I cannot say enough for the people here,” Mrs Saunders said.
“They saved his life, they saved ours.”
Dr Peake said throughout the whole ordeal Harrison smiled.
“He was pretty amazing,” she said.
Harrison endured blood trans fusions, nasal tubes and intravenous medicine though a pipe in a major blood vessel in his heart.
But he never held a grudge. “It was all needles and tubes and tests and then five minutes later he is laughing and smiling,” Mrs Saunders said.
“He puts the adults to shame. “He won’t remember it. We won’t forget it.”
Now, more than ever, they are looking forward to coming home.
Harrison is out of hospital but has to remain close by until the 100th day after the transplant and the new baby is due on April 19.
Mrs Saunders hopes to be home in May.
“It’s Mother’s Day in May,” she said.
“And this is not home for us. We have our brand new dream house we haven’t seen yet in Kelso.”
Medical bills and losing a second wage has hit the family hard financially.
“We cancelled the pool, the patio, the fence and the yard - it’s just dirt now,” Mrs Saunders said.
“Ivan and I have always said your dreams change. We wanted a nice house but our dream now is just for three healthy kids.”
However, the dirt patch poses bigger problems for Harrison.
He must remain in sterile conditions and will not be allowed outside without ground cover.
The family needs turf but can’t afford it.
Harrison will be confined in his own house and in the Townsville Hospital - away from other children until his immune system builds up over the next few years.
Doctors hope he will be able to go to a normal school by the time he hits adolescence.
Dr Peake is confident now that if the transplant is successful he will eventually lead a normal life.
“The transplant might be a cure but we do not know that yet. “He will need ongoing constant monitoring, it will be a bit of time before it function fully, they have to keep him away from a chance of disease.
“There were risks so he might not have got through it.”
Yesterday Harrison started walking, which experts believe is a good sign.
“He even shook his little bottom to dance to Hi-5 and started dancing,” Mrs Saunders said.
“Now I can kiss him again and we are making up for lost time.
“I can even change his nappy now - it sounds strange but I really missed that.”
Now the Saunders’ just want a normal life again.
“We are the most ordinary people, there is nothing special about us to anybody except us.
“We go to work and come home to spend time with the kids - that’s our life, we never wanted anything else.”
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