Hereditary sphereocytosis

[cyberpet]

  My 5 year old grandson was diagnosed with this disorder at the age of 3 weeks.  Basically, his bone marrow produced his red blood cells but they were fragile an not shaped correctly.  His body saw them as foreign and his spleen gathered them.  He had 27 blood transfusions by the time he was 15 months old.  His spleen was removed at the age of 18 months.  Doctors don't like removing a spleen at that young age but the choices we were faced with was either splenectomy or a bone marrow transplant.

  We decided a bone marrow transplant was so painful and wouldnt solve all of the issues so his spleen was removed.  His spleen was twice the size of an adult one. Since the surgery he hasn't needed another transfusion and he actually is growing some.  He is still the smallest in his class and his 2 year old sister is as big as he is but we thank God every day that we have him. 

The reason I am writing this journal is to let other parents and grandparents know that if you question a doctors judgment, don't be afraid to speak up.  When Jaden was born he was so jaundiced that the docors in Athens decided to send him to Columbus right after birth.  He was in the neonatal unit for 6 days under the bili lights.  His hemoglobin level finally reached a number they were happy with and they discharged him.  I finally went back to work.  He was born on August the 7th so it was very hot out still.  I came home from work that first day and picked him up.  He was burning up with a fever.  My daughter was only 19 when she had him and thought that he was hot due to the weather.  I phoned the dr we had chosen and got him in right away.  I asked the dr to give him a blood test to check his hemoglobin level. For what ever reason, he refused to as he had just been discharged from Childrens.  I went out into his waiting room and phoned a new dr who had just set up a practice in Athens.  He had us come right over.  He walked in to the room, looked at me, my daughter and Jaden.  (he had never laid eyes on any of us before)He told me that there was something seriously wrong wit Jaden that he was way to pale.  He gave him a blood test and we were  back up to Childrens that day!  Had we listened to the first dr Jaden wouldnt be with us today.  Its been a difficult road for him but he is here and for now is doing good.  He will be on antibodics for the rest of his life and the disorder has no cure but he is still here!