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MWS Stories

South Africa > Michelle

Michelle was born naturally at 40 weeks and 3 days with forceps at 5 minutes to 12 noon.  The day after her birth she had still not passed her meconium (first black poo).  She had x-rays and she was transferred to Intensive Care.  She was diagnosed with long segment Hirschsprung’s disease and had her first colostomy operation at 3 days old (where they brought part of her colon to the surface and she started wearing a colostomy bag).  During this operation her right foot had a probe on it to monitor her saturation/oxygen levels etc.  4 hours later when Michelle was wheeled out of theatre and back into Intensive Care we noticed that her right foot was bandaged and we did not get a full explanation of what happened to her right foot. Later as Michelle grew but was still not walking the right foot was swollen.  We consulted with two plastic surgeons at the time and they both said it was scar tissue which would reduce when she started to walk.  Till today Michelle’s right foot is more than 3 centimetres fatter than her left foot and we struggled to get shoes to fit her bigger right foot.  Michelle has been seeing two different physiotherapists on an ongoing basis for this foot as well as for her low muscle tone.

She stayed in Intensive care for 3 weeks during which time the paediatrician diagnosed a heart defect.  Michelle was transferred to another hospital where a heart surgeon repaired Michelle’s coarctation of her aorta.

Michelle then had a reversal colostomy operation which was unsuccessful just before her 2nd birthday.  Another complication which happened subsequent to the reversal colostomy operation whilst Michelle was still in hospital was that she contracted septicemia from a drip in her left foot.  Michelle went into DIC a medical term Disseminating Intravascular Coagulation which means the body shuts down and blood only flows to the vital organs ie heart, liver, kidneys etc.  Michelle’s lower left leg went purple and after 2 weeks she had plastic surgery to cut off all the dead tissue and was replaced with skin from her bottom.  In some places on her left calf the plastic surgeon cut right down to the bone because the damage to her left calf was so severe.

Michelle had just started walking a week before being admitted for this reversal colostomy operation and then with this complication spent 5 weeks in hospital and went home not being able to walk at all. The plastic surgery never took on Michelle’s left ankle and she had an open hole there which had to be nursed by a home nurse who came to our house 3 times a week.  After 4 months the hole in Michelle’s left ankle eventually grew closed.

Six months later after having no colostomy bag but having an open wound on Michelle’s left ankle she was not able to bath or swim nor could she walk for 4 months.  Then 2 months later Michelle was readmitted to hospital 3 months in a row for vomitting.  During which time the paediatric surgeon did an anul stretch to try to alleviate a blockage she had and was not passing stools through her anus.  Eventually then the paediatric surgeon had no choice but to perform another colostomy operation.  Once again Michelle had another colostomy bag for all of us to contend with.

When Michelle was 5 years old we attempted another reversal operation of her colostomy.  Yet again this was unsuccessful and by then too much of Michelle’s colon had already been removed and an ileostomy had to be performed 3 weeks after the 2nd reversal colostomy op.  Because she had 2 big 3 hour operations within 3 weeks of each other and being under anaesthetic for such a long time, Michelle suffered a left hemi (which is a stroke that affects the left part of her brain) which affected the right side of her body.  Once again she was unable to walk and had to attend physio to enable her to walk again.  She still has some lasting effects of the stroke ie her right foot does not stay flat on the ground as her toes curl under her right foot.  She has a very weak right hand, arm and leg.  Luckily Michelle was left handed before the stroke.

Up until December 2007 Michelle was having physiotherapy every week.

The ileostomy is much more difficult to live with than a colostomy because the colostomy comes from the large intestine, the colon and the ileostomy comes from the small intestine, the ileum.  The discharge is fairly constant and watery and contains large amounts of salts and digestive enzymes which are potentially irritating to the skin.  The skin surrounding the stoma, called the peristomal skin, must be protected from direct contact with stool.

Now years later after the extensive damage to Michelle’s lower left leg and left foot, this leg is more than 4 centimetres shorter than her right leg.  The growth plate in her left ankle has been damaged which means that the left leg grows much slower than the right leg.  This has led us to visiting lots of orthopaedic surgeons as well as a professor in plastic surgery but none of them have a solution for her deformed left leg and left foot.  Michelle wears a custom handmade from leather boot which is built up more than 4 centimetres and covers her left calf and ends just under her left knee.  She wears the same colour shorter boot also custom handmade from leather on her right foot.  Michelle’s left foot supernates (rolls outwards) and her right foot supernates (rolls inwards), so inside both these boots are special inner soles to counteract these two different problems.  When Michelle walks barefoot she struggles a lot.  The boots are made annually at a local Orthapadic centre and because they are handmade and made to fit Michelle’s feet specifically, they are very costly (6 500.00 South African rands).

In addition to all these problems Michelle has had numerous epileptic fits from 3 days old.  At first they were just fever related then they occured without the fever.  She was diagnosed as an epileptic and has used various medicines.  At present she is on Epilim and Rivotril 3 times a day.  She has been fit free for 2 years now.  In the past some fits were so severe she had to be hospitalised so the doctors could put up a drip and stop the fits with extra medication.

In January 2007 Michelle suffered from a bladder infection and was put on permanent antibiotics to prevent further bladder infections.  In September 2007 Michelle suffered from gastro (continous runny loose watery stools) and was hospitalised for 3 weeks.  After 2 weeks the paediatrician did not know what else to do to help Michelle and I suggested he contact a gastrienterologist (specialist for stomach problems).  She diagnosed Michelle as having a sodium shortage and changed the solution that went into Michelle’s drip.  Both specialists confirmed Michelle had a parasite in her bowel.  No medication could help Michelle we just had to wait until her sodium levels improved.  Michelle has consulted with a gastrienterologist prior to this episode.

On 10 December 2007 Michelle got another bladder infection (the 2nd one in 2007) and was put on stronger antibiotics but she never improved.  We took Michelle back to the paediatrician on Christmas eve (24 Dec) and he never even took a urine sample saying she looked better than on 10 Dec.  We spent the whole of the Dec holidays looking after a very ill Michelle.  Eventually on 1 January 2008 (public holiday) Michelle had a fever of 41 degrees and we phoned the paediatrician only to find out that he had gone away on holiday.  We then were referred to a professor who was in charge whilst the other specialist was away.  Michelle was admitted to hospital from 1 Jan. for 2 weeks on a highly toxic (to the kidneys) antibiotic to treat her bladder infection.

Michelle has been in hospital every month this year except April (every month over the past 6 months) for recurrent bladder infections.  Often being treated with this highly toxic antibiotic.  Michelle has also undergone every kidney and bladder test possible to find out why she was getting the recurrent bladder infections.  The final test showed that Michelle has an overlarge bladder with low pressures.  This means that she never completely empties her bladder and there is always a residual of urine in her bladder.  We also took Michelle to a neuphrologist during this period.

The urologist that we consulted for this recommended Michelle have a permanent catherter fitted.  On 14 July 2008 Michelle once again went into theatre to have a supra pubic catheter fitted which comes straight out her bladder and the catherter pipe emerges from an incision under her belly button.  This catherter bag must be changed every 2 weeks or when it is needed.  The catherter pipe coming out of Michelle’s navel must be changed every 6 weeks by the urologist.

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