Talipes Information and Parental Support Group

Nicholas' Story

TIPS Newsletter   November 1996

Nicholas Nola
by Nicholas’ mother, Jennifer Nola

At 28 weeks pregnant we were scheduled for another ultrasound to see how our twin babies were progressing.  The late Beresford Buttery performed the test and everything seemed o.k. until near the end when he said “There could be a problem with Twin 1’s feet, they appear to be turned inwards indicating Talipes”.  Steve and I looked at one another wondering what Talipes was.  Beresford tried hard to alleviate our anxiety and told us that at the next ultrasound, scheduled for 34 weeks, it would become more apparent if the condition was positional or otherwise (there was no sign of Talipes at the 18 week ultrasound).  He assured us it could be corrected with plasters and worst case with surgery.  We headed home with so many questions going through our heads.  The old favourites of course were “How could this happen?  Was it something to do with the lack of space inside seeing there were two babies?  Was it because the baby was in the breach position?  Had we done something to cause it?”  As we now know no-one has the answers we wanted.

At 30 weeks our worrying about Talipes was quickly put on the back burner, Twin 1 had decided it was time to explore the big wide world and I was admitted to hospital.  The main focus now was to delay the babies birth for as long as possible.  On Thursday 22 June 1995, at 31.6 weeks gestation, Nicholas (1456 gms) and James (1718 gms) arrived and were whisked away to the Special Care Nurseries.  We were lucky, apart from the problems of the first 24 hours, our boys were in pretty good shape, they were just too small to keep themselves warm or to suck.  The paediatrician confirmed the Nicholas had Bilateral Talipes Equinovarus and the specialist was called in on day 2 to apply plasters to his legs and tiny flipper like feet.  We had begun our ride on the emotional roller coaster of life in Special Care Nurseries.  As Nicholas was in an Isolette and I was recovering from a Caesarean delivery on another floor we didn’t get a lot of opportunity to examine him before he was plastered.  The plasters looked enormous on his tiny little legs but by the time he was a couple of weeks old he was waving his legs in the air to everyone’s amazement.

Of course everyone wanted to know what happened to his legs, the nursing staff even told one trainee that he had been dropped and had broken his legs.  The poor girl nearly fainted!  The changing of the plasters on a premature baby was always a stressful time as we had to make sure Nicholas didn’t lose too much body heat whilst lounging in the bath.  It became quite a production, me holding the baby, Steve frantically trying to release the knobs of plaster, my father-in-law on warm water top-up duty and my mother-in-law supervising and occupying James.  Unfortunately we didn’t know about TIPS at this stage.

After a false start at 4 months old, (Nicholas’ feet were too small), we graduated from fortnightly plaster changes to braces at 5½ months of age.  His feet seemed to be progressing well and were starting to look normal.  Unfortunately within 5 weeks we were unable to keep the brace on his left foot and he had developed pressure sores from my efforts to tighten the braces.  We went back to the specialist thinking the braces needed changing only to be told our efforts had been in vain - Nicholas needed surgery!  To say I came away from that appointment in shock was an understatement.  The specialist had original said “we will know by the time he is 18 months old whether or not surgery is necessary.”  I had taken that to mean that he won’t need surgery before he is 18 months old.  He wanted to operate in 2 weeks time but I couldn’t get myself organised or psyched up in such a short space of time.

Six weeks later on March 20 1996, Nicholas had his first operation and was a very sick little boy afterwards.  The pain relief used was a sciatic nerve block and Morphine which knocked him rotten for days.  When the leg block wore off the Morphine was turned up and he was too doped to either drink or eat.  To top off our 4 days in hospital he picked up gastro (not much fun when you are in plaster) before we were discharged and came home dehydrated.

A fortnight later we were back for the change of plaster and operation no. 2 with me being much more assertive and better informed than the first time around.  This time the Sciatic nerve block was left in for 2½ days and Nicholas was eating and drinking as soon as he was allowed to.  He was a much happier baby and only lost a small amount of weight, if any, as a consequence (an important issue for premmies).  Two weeks later we were back again for the 2nd change of plaster and the added touch of some hot pink fibreglass much to my horror!

During all this Nicholas never seemed to notice he was any different to James and crawled, plasters and all, 2 weeks before James got his act together.  He had just tried to stand in his plasters when they were removed 10 weeks after the first operation.  It was such a relief to see that his feet looked pretty normal.  Just under 4 weeks after having the plasters removed I found Nicholas standing up in his cot, a very happy day in our house!  All is progressing well now and after a recent check up we don’t see the specialist for another 6 months.

To say the past 13 months have been challenging is an understatement.  Life seems to work in weird and wonderful ways.  We were lucky to have been told that one of our babies probably had Talipes before they were born.  It gave us a chance to prepare ourselves and to become better informed very early on.  I am also sure that having two babies the same age who had started out life in such a tenuous fashion has also helped to try and keep Nicholas’ problems in perspective.  He is a happy little boy who is totally unaware he is different to his brother in any way at all.  I also found that a few visits into the Orthopaedic ward of the Royal Children'’ Hospital has made us very thankful that our child only has Talipes.

My suggestions to anyone in a similar situation are to become as informed as possible about Talipes, don’t let other people blow the situation out of hand and if your child is in hospital don’t be backward in asking questions or offering your opinion on how you think the child is or isn’t feeling.  Mothers are more tuned into their child’s needs and feelings than the most caring medical person.
 
 
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