Newly Diagnosed

I have a year and 5 month old baby with SCD. I live in Nigeria where health facilities is in shambles. Please advice on general knowledge of how to take care of him. His food, environmental and possibly if a cure can be arranged for him. My heart breaks and feel guilty each time I look into his eyes.

 

With you I feel very sad and moved by this question.  Every mother who has a baby diagnosed with sickle cell disease feels the same way.  Your beautiful baby is so small, so fragile, and you feel so helpless and guilty.  Though it may be impossible not to feel remorse, there is no reason for guilt.  This happened, there is no fault and no blame.

 

If possible contact or go to the Sickle Cell Foundation Nigeria and find out what care is available in your area for infants and children who have sickle cell disease.  There is also the Nigerian Sickle Cell Disease Network which has a list of the sickle cell centers in Nigeria.

 

There are things you can to do to protect your infant against infection.

 

Malaria is life-threatening for all infants and children in Africa, particularly in Nigeria.  There is a program called Seasonal Malaria Chemoprevention (SMC), if possible you should investigate to see if your baby can be protected against malaria through this program.  Of course, bed nets, not having standing water near the home, and clearing brush can decrease the number of mosquito bites and mosquitoes.

 

The risk of bacterial infection can be decreased with penicillin or amoxicillin given twice a day (the dose for babies is 125 mg).  This does not prevent all infections.  Your baby should be seen by a doctor for treatment if there is any fever or if you think your baby is not feeling will.

 

Immunization is very important for babies and children who have sickle cell disease.  You should try to have your baby immunized against infections.  Pneumococcal infections are the most common in sickle cell disease, but all immunizations are important.

 

Folic acid (folate) is given to babies and infants with sickle cell disease, babies should be breastfed if possible.  Otherwise the same diet you would feed any baby is good for babies with sickle cell disease.

 

There are facilities in Nigeria for children who have sickle cell disease, I hope you are close to one of these centers so your baby can be seen by a sickle cell disease doctor.

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