Harry's Journey

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My son Harry was born eleven weeks prematurely in 2013.  Polyhydramnios became apparent at 21 weeks of pregnancy, and at 22 weeks I was admitted to hospital, having contractions.  I spent most of the next seven weeks in hospital, having a total of four amnioreductions which drained a total of 23 litres of fluid.  At 28 weeks I went into labour and Harry was born the day after by emergency c-section at exactly 29 weeks gestation.

  Harry weighed an impressive 4lb 4oz, but he lost a lot of that weight rapidly because of polyuria.  He was also hypokalaemic, as well as the usual problems of prematurity.  After a couple of weeks we were told they suspected he had Bartter Syndrome.  Genetic tests have not confirmed the diagnosis, but because of the symptoms he has and his response to indomethacin, they are sure that Harry does, indeed, have antenatal Bartter Syndrome.

Many things about Harry have mystified his paediatricians.  He doesn't have trouble with weight gain or growth, and is large for his age.  He does have some of the physical characteristics associated with the condition, such as a triangular face, drooping mouth, low set ears.  He has hearing and speech issues too.  His potassium levels are usually quite stable, but when he gets any sort of sickness he can deteriorate very rapidly and suddenly.  He is prone to urinary tract infections and has become very ill and required admission to hospital several times for treatment and fluid replacement.  He seems to not cope with normal childhood ailments.  This is improving somewhat as he gets older.

As his carer, I have seen him go through a lot, and as his mother it hasn't been easy.  His journey has been remarkable, my little warrior.  I think the hardest thing is knowing that there will be many battles to come.