Hello, my daughter Kennedy was diagnosed with Sickle cell SC disease at birth (born June 2006). When she was first diagnosed her pediatrician told me that she would probably never have any problems with the disease and referred me to a hematologist.
When we first went to the hematologist (St. Vincent Hospital) my husband and I were never given a straight answer on whether our daughter had the disease or had the trait. This is when we took our daughter to Riley Hospital for Children to find out what was really wrong with her. This is one of the best hospitals for children in the country with a comprehensive sickle cell clinic that sees over 400 families a year from all over the state of Indiana and other states.
When we went to Riley Hospital we were given literature a support group, and additional information to help us deal with the ongoing issues and complications that sickle disease comes with. My daughter’s hematologist was very honest and open with us and told us what to expect and that after 6 months of age (the honeymoon stage) we could see the disease manifest itself.
Boy was he right! On January 2007 (Kennedy was 7 month’s old) she had her first hospitalization. We did not know what was wrong with her but she had a fever of around 102 that would not go away with Tylenol or Motrin. They did extensive testing and her hemoglobin was around 7 then (of course she was too young to know what her “normal” hemoglobin was supposed to be). She was not given a blood transfusion at that point but she was just diagnosed with the flu, the B strain. She had just been given the week before the A strain flu shot.
Then in February she was back at Riley hospital for another fever and possible infection. As the months continued, she as in and out of the hospital for minor virus infections about 5-6 times.
In September of 2007 was Kennedy’s first major crisis. I had brought her home from daycare and she was very lethargic and running a fever around 101-102. I immediately took her to the hospital and one of the doctor’s could feel her spleen (her spleen could never be felt prior to this). We knew that something was not right. She needed an immediate blood transfusion because she had her first splenic sequestration. She was hospitalized for a total of 6 days.
Again at the End of Dec. of 2007 she was hospitalized again for splenic sequestration, fever, and breathing difficulties, and oxygen levels were dropping in the 70’s.
She tested positive for RSV (the dangerous respiratory virus) and pneumonia. This time her spleen was even larger than her first splenic sequestration. She was given a blood transfusion and was hospitalized for 6 days. (Her hemoglobin during that time had been (the day before was 10.8 all of the way down to 8.1 within 24 hours).
After this, it was decided that her spleen had to be removed so she just had a splenectomy Tuesday, 1/29/08. The surgery went well but then she was given too much anesthesia and it took her a long time to wake up from surgery (therefore she could not get up and walk after surgery for a while). She developed pneumonia again and her hemoglobin dropped. She was given another blood transfusion and was in the hospital for 5 days.
My daughter is only 19 months and has been through a lot but I know that God is able to heal her body and give her strength. She is a fighter and with a lot of family support, studying and knowing about the disease (knowledge is power), having a support group to go to, you can have a more positive outlook. God will not put more on you than you can bear.