Sam's Story

30/09/98:   Sam was born on 30/9/98, with a condition known as Pierre Robin Sequence/Syndrome. This involves a cleft of the hard and soft palate, a recessed chin and glossoptosis, where the tongue obstructs the upper airway.After a very long and difficult labour, Sam was born 'flat'; he required immediate resuscitation and ventilation. His condition, of Pierre Robin, was diagnosed almost immediately after birth.

  Mum and Sam at 2 weeks old Sam and Mum at 2 weeks
 
04/11/98:   Sam spent 1 week in I.C.U and a further 2 weeks on a Paediatric ward, the emphasis here was on getting him to feed, which was achieved by both bottle and by naso-gastric tube feeding. He was discharged home on this regime at 3 weeks old.
  Sam at 5 weeks old Sam at home at 5 weeks old.
His chin is very obvious here.		  
04/12/98:   Sam was at home for 5 weeks but was then admitted to Temple Street Children's Hospital, Dublin for 'dietetic assessment', due to his failure to thrive. Although he had begun to take all his food orally he was not gaining weight, which was not helped by his tendency to vomit after each meal. (We were later to find out that he had developed a large 'reflux' problem and this along with the energy that he was using up just to breathe was preventing him from gaining weight).
  Sam with Auntie Pat Sam aged 8 weeks with his Auntie Pat.
In Hospital back on the NG feeding
and requiring Oxygen.
 
08/12/98:   After two weeks in hospital on high calorie formula and being fed nasogastrically, Sam had not gained any weight. It was also discovered that his oxygen saturation levels were dropping to below 60%. It was at this point that we met with the E.N.T surgeon who advised a nasopharyngeal airway, and if this was not successful, a tracheostomy. The nasopharyngeal airway was unsuccessful and was removed after 32 hrs. By this time Sam was completely exhausted and was placed on C/PAPP in I.C.U. At this stage he was unable to breathe on his own.

  Sam at his Christening, aged 10 ½ weeks.
(connected to the C/PAPP machine). 		Sam at Christening
 
15/12/98:    Sam has his tracheostomy 5 days later. This is him 1 day post trache.
  Sam 1 day post tracheostomy  

30/01/99:   Sam aged 4 months, with his two favourites, Clive the caterpillar and his haberman bottle. He has begun to thrive, having overcome two bouts of broncholitis and gastreoentritis.

Sam, bottle and clive
 
18/03/99:   Sam was discharged from hospital at 51/2 months of age. By this time we had a portable suction machine and a home nebuliser, as well as boxes of catheters. During his time in hospital we had both learnt to change his Trache tube, which we did every week. And although initially we managed to keep him out of Hospital, over the next 3 months he did have to be re-admitted twice with chest infections and a rasping cough and once for chickenpox. After his chickenpox Sam started to get stronger, his reflux had all but gone, and the amount of suctioning and nebulisisng he required reduced to a manageable level.
 
14/06/99:   At the age of 81/2 months Sam was readmitted to Hospital for Scheduled Palate Repair Surgery. The photo below was taken just before we left to go to the hospital.
 
pre palate surgery
 
17/06/99:  2 days post palate repair, the splints keep him from putting his fingers in his mouth.
Sam in splints
09/07/99:   Sam was discharged from hospital 1 week post surgery, and after some initial pain and discomfort he coped very well. From this point on Samuel's feeding improved greatly, being able to eat finger food easily and we were able to wean him off the Habermann teat and onto a normal one (albeit with a slightly larger hole than normal). Here he is 3 weeks post palate surgery.
Sam 3 weeks post palate surgery
18/08/99:  Sam revisits hospital for a routine Bronchoscopy, because he has done so well in the last  few months, his chin has grown out noticeably and he is able to make audible sounds, we know that there is a chance that he could be decannulated (i.e. remove his trache tube). However it was still a great shock when the the E.N.T. Surgean does actually decannulate him. Apparantly Sam's airway had improved significantly due to his chin growing enough to bring his tounge forward to provide him with an adequate airway.

 Here he is 1 day later.

Sam 1 day post decanulation

14/11/99:   Sam aged 1year, and what a year! He is a very healthy happy baby, much loved by everyone.

Sam with dad Santa with Family
Sam with Dad Sam meets Santa on his second Christmas

 

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